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As a CG for 10 plus years, I have had many seniors in assisted living and memory care at various facilities. Every single one promising the absolute best and most compassionate care in the industry. When families realize that their LO is declining, losing weight, or something just does not line up with the promises made at lease signing, I am asked to go “visit”. There are always a select few staff members that do have integrity and a heart caring for seniors. But they are far and few between and can’t be there 24\7. I have seen, year after year, countless residents at various stages of disease unable to physically or cognitively feed themselves. Some had ALS or PSP leaving no ability to hold a fork or swallow safely. In the first year, I really believed that the staff simply were not informed or on the same page with each residents needs. No, they knew. Then I thought, I could help feed a struggling resident bc the staff was so short handed. But for legal reasons, being private care that is not allowed. So I would pull a family member aside and quietly, ask them if their loved ones care included feeding assistance & let them know that it was not happening. These places all promise the world for your LOs and do not disclose the staff/resident ratio unless you ask. Even if you ask, most often it is nowhere close. A group home or skilled nursing are possibly the best options for meal assistance. Unless you have private care or visit often and come during meals unexpected, you will never know although you may suspect. Mind you, all that I’ve seen over the years at multiple facilities was all preCOVID. With no visits since the pandemic, I am terrified just thinking of the thought of not being able to check on our LOs. Especially since the staff ratio was always low before Covid.
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cwillie Jan 2021
Truth. No matter what is promised and how well-intentioned the bottom line is that these places are not ever going to be able to provide the kind of one on one care many people require.
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My MIL is in LTC in a well-run facility. What I have learned is that by law (in my state) they cannot control what a resident eats or drinks, however, I'm not certain if this is conditional to them having signed a DNR when they moved in or not. When I requested that my MIL not have her dessert put on her tray until she ate some of her main meal (because she was only eating dessert and nothing else) they said they couldn't do that because that's considered "withholding food". No matter how I argued with them about it they would not do it.

But they do record what she eats and how much. At the quarterly meetings they could tell me her weight and any change, and how much food she was intaking. When my MIL had covid last May there was a span of time when she barely ate or drank. Because of her DNR they would not give her IV fluids. She thankfully recovered, but it has been very eye-opening to learn the many rules and regulations the hard way. If her facility is in the throes of a covid outbreak, I guarantee the admin and staff are running around like their hair is on fire Ithat's how it was my MIL's places). As the staff get covid they are understaffed and there are no subs available. You will have to be patient with this situation until they can get it under control.

Your situation is an example of why people need to fill out their Living Will with their physician's guidance: because a non-customized form may not do what you think it will. FYI most doctors think the standard advance care directives are NOT helpful in providing guidance and carrying out the wishes of the signer. I wish you much peace in your heart as you work through the care challenges. And do not pay any attention to trolls on this forum who try to shame you for your decisions.
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When my dad was in rehab the day staffing was good and it seemed he was cared for. The evenings and nights I found out later were horrible due to short staffing. Dad was bedridden due to toe amputations. He lost 20 lbs and begged me not to send him back there. I arrived everyday to feed him lunch and paid a private sitter to feed him dinner. He was not cleaned in a timely manner at all. It was a very hard situation but the hospital sent him there. Staff was expected to feed many patients at the same time.

Get the hospital social worker involved and either move her to another facility or get more help at home.
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You calling people who put their parents in a nursing home a disgrace is very hurtful and unproductive.

Who are you to judge people like that?
Not everyone is afforded the luxury of the resources to be able to bring their parents home and quit their jobs to care for them.
I thought this forum was to help others, not to judge and make people feel horrible about their decisions.
Please try to help instead of judging. There is only one who can judge and even he doesn't.
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Chris52 Jan 2021
I don’t see anyone on this forum calling anyone a disgrace. People are describing their own personal experiences. Some people are privileged to have a choice, others not. And all of our limitations are different. It’s just really, really unfortunate that sometimes our choices mean less than adequate care, and I know this (with deep regret) from some hard lessons.
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If you have a hall full of patients to feed, and one person can take over an hour--do you honestly believe they are going to be able to so? They will simply chart "refused" That is why I never put my mom in a SNF and are cesspools of disease even before COVID. I mean if one patient had scabies, the rest of them would. If one patient had the flu, it rapidly spread to the rest. C-diff diarrhea is also common in nursing homes since doctors feed them antibiotics like a salad, even for a cold. Compounding the problem is that nursing homes are short staffed, and there is a high turnover. CNAs are poorly paid and it is very difficult, back-breaking work. It is safer to work for Wal-Mart.

Staff can also be assaulted by patients, and not all CNAs report this to the charge nurse. When the patients assault staff they need to be put in a psychiatric facility and medicated to control behavior. Patients hitting, kicking, spitting at staff is yet another source of stress for CNAs.

But taking care of someone with Alzheimer's at home will completely consume your life and you will not be able to work; it is very hard and very very stressful, and EXTREMELY expensive. Many people do not have a choice but to put them in a SNF. I took care of my mom at home for 15 years, and it nearly destroyed me emotionally when she died. She made it to age 90, which was nothing short of a miracle considering she had insulin-dependent diabetes (I had to give her injections three times a day, but I kept her sugar levels absolutely stellar), high cholesterol which I could NOT treat due to her liver disease, and years and years and years of kidney disease as a complication of diabetes. Mom's medical management was highly complex, and in the end I had to put a feeding tube in her so she would not die of dehydration--she did great with it and I though she would last another ten years! Ironically she died NOT from Alzheimer's but kidney and liver failure which means even if she were a self-caring walkie-talkie the same would have happened to her...and her skin did not have one single mark. That feeding tube alone was a LOT of work because you have to check residuals, keep it patient, and assess the tube site and keep it clean. Mom never bothered it. It was a last resort, and she was pretty much no longer responding to the environment. I bought "tube tops" from Amazon to keep the covered which was comfortable for mom. But mom consumed my life and the moment I woke up to the point I went to bed it was around-the-clock care. So when mom died it nearly destroyed me emotionally but I had to recover, which I did, and I'm gainfully employed and working toward my Master's degree.

Just call me a recovered caregiver. I miss my mom. God I miss her..but people do die and it's a part of life. Mom is forever free from Alzheimer's and her litany of chronic illnesses. The feeding tube made mum comfortable in the end as her needs were met but her other diseases of kidney and liver is what got her. Mom was on hospice for 2 years and she was only bed ridden for 2-1/2 months because I worked hard to keep her going and walking. Even then I used a hoyer lift to put her in her favorite chair in the living room a few times a day. I thought it cruel to keep in her in bedroom all day. Besides I Had to change her diapers very frequently and keep her clean. Oh and her bowel schedule. Thank God for lactulose and her feeding tube. She moved her bowels every Tuesdays, Thursdays and Sundays like clockwork. To prevent impaction.

Did you know NOT ONCE did hospice ever have to use the "emergency pack". Not once did I have to give her any narcotics or psychotropics. Hospice nurse came daily when mum was dying (when symptoms appeared of liver failure she died within days), and they were surprised how comfortable she was with no drugs, and her death was the most peaceful one could ever hope for.
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Wasmorton Jan 2021
Well, bully for you! We don’t all have the luxury of being able to care for our loved ones at home. I took care of my mom at home for 16 years while I worked a full time job. When she became unable to walk I had no choice than to seek LTC. Pre COVID I fed her dinner every night. I visited every day. I made sure she was clean and fed. I made sure she had human contact and knew she was loved. Since COVID I’m absolutely devastated that I can’t be a part of her day to day care. For you to get up on your sanctimonious high horse and try to make the rest of us feel “ lesser than” is sad. You have no idea what others are dealing with day to day.
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I placed my 68 year old husband in one of the top memory care facilities nearby, paying out of our retirement fund monthly, since September, 2020. He now has lost over 20 pounds and I've questioned the nursing staff several times about this concern. I was informed that he was eating and drinking good, and the weight loss is probably due to eating more healthier food and no junk food that he occasionally had at home. I'm mainly concerned about him being dehydrated, because he always drank coffee, water, and a soda every day. I understand this is part of Alzheimers, not knowing when or if they are hungry or thirsty. I've been taking him a couple sodas a week, along with an apple, and snacks. He drinks the soda, but when I peek in his window while visiting (no indoor visits, thanks to Covid), I notice that his snacks are still laying around on his desk or night stand. Not sure if he even remembers what they are or how to open them. I frequently ask him when he calls if he's eaten, and if someone is there at his same table to eat with him. It is my understanding that it's the staff's responsibility to have a worker sit with the residents during meals. But when I asked the staff if they monitor what and how much he eats, they said "no". This really concerns me. I am comfortable, though, that our primary doctor visits with the facility and stays in touch with the facility nurse about any changes, i.e., medicines, vitamines, etc. It's all just overwhelming of the various changes one goes through with this horrible disease, which never gets better. My husband always says he feels good, but does he actually know when he feels bad? He can't identify objects, and his concentration when conversing has diminished. Facilities are short staffed, but I think they should at least make sure that they meet our requirements for caring for our loved ones. Especially for the price we are paying. When it gets to the point when the resident no longer can do for themselves, the only thing they can recognize is care, love, and TLC. I pray that the employees keep this in mind. Meantime, all we can do is Pray.
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Nursing homes are perpetualy short staffed.
They should monitor what they bring in for her to eat and what's left
Make sure you are raising your concerns to the administrator , daily if you have to
Our elderly parents need us to be their advocates.
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Unfortunately, the short answer to your question is 'yes, I believe an overwhelming majority of facilities are like this'. We are on our third facility with mom, and I'm praying that it's better than the first two. They all promise the moon, and then do almost nothing to keep those promises. Sure, we can make excuses that they are understaffed because of covid or whatever, but, honestly, I think that most places are like this. They are a business, after all. Their main goal is to make money. Off of our love and concern for our parents or other relatives. If there is any way to get her into hospice, I strongly recommend it. That seems to be the one bright spot in our country's elder care system. So much attention , care, and knowledge was available to me through hospice when my dad was starting to fail. If that isn't an option, keep,looking for other facilities that could help your MIL. Having had bad experiences at other facilities helps you ask better and more precise questions when looking at new facilites. My heart goes out to you. It's exhausting.
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I’m sorry to hear but sadly you can’t get them to drink because of a suggestion. The thirst drive in the elderly diminishes with age. Add dementia on top of that and it’s hard to keep them hydrated. Pretty much a losing battle and the staff are overwhelmed so don’t count on that much. My dad would never drink even though fresh water daily by his bed or chair was in his care plan. Finally they found he loved drinking Boost so he would have several of those a day. Also he loved having a coke. I had to supply them because the LTC stopped giving residents sodas. I agree that a care conference is needed and maybe some of these suggestions would help her with calories and hydration.
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lynina2 Jan 2021
Yes. My dad loved orange soda and coca cola. Mom on the other hand enjoyed the Clear Ensure which is like a juice box. It helped a lot.
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Most nursing homes are always understaffed and COVID makes it even harder with constantly changing personnel. My first thought is to have her assessed for hospice services. Sounds like some of her recent problems could be considered a decline.
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Pressure down and HR up is often heart failure. In the elderly it can lead to total systems failure especially with Covid-19 pneumonia. As you have already observed, even at home your MIL was not doing well. Force feeding any elder is exceptionally dangerous, leading to aspiration and aspiration pneumonia. You have mentioned dementia and no appetite, and I wonder what other underlying conditions may be at play here for a total failure to thrive that lead to MIL entering care now when Covid-19 is afoot in the land. As you may know, the caregivers in facilities often work not one, but two jobs and are constantly coming and going.
Please have the POA for MIL discuss with her doctors now whether it is time for palliative care, comfort care, and possibly hospice. You have not given your MILs age.
Certainly you can explore other facilities that might be willing to accept your MIL but I would wait until Covid-19 vaccinations have happened in your area for ease of visiting to assessing. Good luck.
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Spoiledpets Jan 2021
She is 84. She’s been declining for sometime. Over the past year it’s gotten worse. She got to where she was scared all the time and didn’t want to be alone. She developed that UTI that I mentioned and wasn’t wiping or bathing herself like she needed to be. Her blood pressure has dropped like that in the past and when I took her to the ER it would bounce back after they gave her fluids.

CHF has been mentioned before; the cardiologist pushed for her to drink plenty of water. We thought that maybe she was forgetting to eat and drink and having supervision would help. I’d bring her dinner but she was still capable of using the microwave to fix herself something during the day. She was good about it too until maybe a couple of months before she went into care. Part of the decline I guess. She really didn’t need to be by herself anymore. I hated that she had to go into care at a time like this. It felt like a catch 22. She needed more care than we could give but we also worried about exactly what has happened now. Add to that, her doctors were no help as far as getting her into care so that’s why we couldn’t get her in before.

Afib was mentioned last night too. It was never diagnosed before so I’m thinking this is new. She is still in the hospital so hopefully they can pinpoint exactly why this happened. Her blood pressure bounced back at the hospital.

Another family member was with her. They know somebody at the hospital and told them that she needed someone there to speak for her due to dementia. The family member gave her something to eat and drink while there. No one has POA.
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Schedule a care conference and kindly let the staff know your concerns. When my mother was in a NH we had these meetings regularly and they were a great help at having everyone informed and on board with the correct care
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The people at my mom's NH mostly worked on the "three tries" principle: ask three times and then count it as a refusal, which is within the rights of all residents - of course there were some employees who were better at getting compliance than others, I can remember lots of therapeutic fibs. People were weighed regularly and a noticeable loss was flagged, that meant a consult with the dietitian and care team to assess the reasons and strategize solutions, these could include adding supplements. assessing for dysphagia, supervised eating and/or being fed if needed. Of course with covid many facilities have closed congregate dining so that has made direct supervision much more difficult, it is much easier to supervise a table of 4 in the dining room than to try to check in on the same 4 people if they are each (or not eating) eating in their own rooms.
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