We recently put my MIL with Alzheimer’s in a nursing home. I have to say I am not happy with them right now. When she was at home she wasn’t eating or drinking like she should. She was losing weight, not cleaning herself up like she should, and ended up with a UTI. She was dehydrated when she went to the hospital before she went to the nursing home. So we thought it best to have her in a long term care facility so trained personnel could help her with bathing, see to it that she ate, etc.

Since she has been there, she’s fallen and fractured a bone. She caught COVID even though they are not allowing visitors except through a window where they can talk on the phone. Now she has pneumonia as a result of the COVID. This is her third trip to the hospital since going to the home. Her blood pressure is way down and heart rate is way up. I suspect she’s dehydrated. I used to have to remind her to drink water on a regular basis.

Aren’t they supposed to supervise them better than that? I don’t mean like be in the room with them every minute but check on them every hour or so to remind them to eat and drink? I am asking because I honestly do not know. She was sent there because she lived alone and we felt like she was no longer safe at home. Living with us or other family wasn’t and isn’t an option. She isn’t living alone now since she’s in the nursing home but that seems to be the only thing that is different from being in her own home. Are they all like this or should we consider moving her? They took great care of her when she went there for rehab but I am not impressed with their long term care.

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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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Reply to Harpcat
lynina2 Jan 24, 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.
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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Reply to AlvaDeer
Spoiledpets Jan 21, 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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My mother-in-law had dementia. She would forget to drink - and didn't seem to care about eating unless I (or her daughter) was sitting there with her encouraging her. Often I would have meals with her. She ate better when I was there - so I would try to come for lunch four or five times a week.
When the lockdown came her daughter sent the nursing home a letter telling them that we feared she would starve to death. I offered to go in every day and have lunch with her and spend a couple hours with her caring for her and doing her physical therapy and exercising - which I had been doing for 15 months - EVERY WEEK. I have been her doctor for 30 years -- since 1989. In 2005 I married her daughter - and became her son-in-law, but to her I was still her "Dr. John" and she always called me that.
I admitted her to the nursing home in 2018. Because of her dementia she required 24 hour care and supervision. With their knowledge and implied consent I not only treated her in the facility - but other residents and employees. When the lockdown came I advised them that I would be the one to continue her care -- going in every day for 4-6 hours to be sure she ate, got her vitamin supplements and did her walking and stretching exercises. The new nursing home administrator - who had just arrived in March 2020 and did not know my history at the facility - and refused to allow me to continue to care for her. She slowly starved for two weeks. She never asked to meet with me to allow me to explain what care I was providing and why it was medically necessary.
We were called the morning of 3/27 to come immediately - as she lay thin-emaciated-dehydrated and gasping for every breath.Her daughter held her hand as she died. Her body was almost totally mottled. The nurse tried to tell her daughter that it has happened "fast". That extent of mottling would have taken SEVERAL hours and I told them that what they were claiming was wrong. It meant that she had most probably laid in bed, gasping for breath for hours as her body shut down. There was no way to bring her back. They had let her deterioration go too far.
They broke the CMS regulations and violated her civil rights by denying her the care of her personal physician who would have saved her life.
Her daughter - with the help of the best attorneys for Nursing Home Litigation in New York State -- BrownChiari will be suing the facility at some point.
It is my hope that they also sue the NYSDOH who labeled me as "non-essential" -in an apparent effort to justify the mistake of the new administrator and her team.
I believe she would still be alive today had I been allowed to continue to care for her and monitor her health. I have testified to same.
Our elderly are being seriously neglected during this isolation. It is my opinion that the Isolation is responsible for more deaths than the Covid virus. They are giving up, they feel abandoned and they slowly weaken to a point of no return.
I will continue to advocate for them and ask that the facilities be open to family immediately. This would not only give the residents hope - and better care - It would improve the quality of care and the staffing which has dropped to a new low during this pandemic.
Maxine was happy and loved her family, her friends and bingo. She should still be here walking, smiling and singing.
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Reply to DoctorCarlone
NobodyGetsIt Jan 24, 2021
Dear "DoctorCarlone,"

What started out as a beautiful and encouraging story, ended in a very heartbreaking way.

I'm so sorry for the way you lost your mother in such a senseless way.

May God's love and mercy comfort you - you will be in my thoughts and prayers.
I have been in the senior health and housing environment for over 10 years and I can say truthfully, all facilities, AL and LTC were shorthanded prior to covid-19, possibly due to the ridiculously low salaries. The situation now is only worse, with staff members taking off because they are ill. And even with the lockdown to visitors, staff members can't stay there 24/7 - they have to go to their homes and deal with their families.
And and since many facilities had to eliminate the congregation of Residence Inn their dining room where it was much easier for a few CNAs to walk around and remind people to eat oh, now that the residents for the most part have to eat in their own rooms the ability to pop in it out even within an hour is really limited -trust me there are not that many CNAs available to do anything -changing, diapering, toileting coaching for eating - during the midst of covid. And it's even worse at night.
Falls are always impossible for anyone to prevent and of course with less staff to watch over residents who try to get up also going to be for more frequent.
Sorry you are going through this and wish I could offer an answer.
I I would however definitely ask for a care conference and I would ask it to be with the unit manager as well as the dln and the social worker. I would explain my concerns diplomatically of course and see if they can come up with a long and short-term solution.
I am a great believer in contingency plans so develop one which means also check for other facilities - some do manage this situation slightly better than others.

Good on this difficult journey and please keep us updated.
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Reply to geddyupgo
Geaton777 Jan 24, 2021
geddyupgo, there has been a labor shortage in the U.S. for several years due to (1) the end of the baby boom generation so a steep dip in the population of young people, (2) not enough or no legal foreign labor allowed to come in to do those jobs, and (3) people not willing or physically able to do this demanding work. There is competition for these entry-level laborers. My son has a masonry business and can't get unskilled workers for full-time $20 p/hr work. That's why I never give money to men begging at intersections who look young and healthy. There are livable wage unskilled jobs out there. People just don't want to do them and there aren't enough people to fill those jobs. Please understand that if the facilities paid the staff more then that cost gets passed on to the residents. Wages/salaries are almost always the biggest expense of running a business. You and I will pay more.
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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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Reply to Warriorforthem
cwillie Jan 24, 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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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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Reply to cetude
Wasmorton Jan 24, 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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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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Reply to Bastinr
Chris52 Jan 29, 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.
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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Reply to cwillie

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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Reply to Daughterof1930

This saddens me. There may be 2 parts to the situation. Staffing and her disease. AZ affects many parts of the brain in the process of nutrition. There needs to be signals that go from hunger, to knowing how to use a utensil, to getting it to the mouth, to chewing and swallowing. If any pathway is gone, the person loses the ability to adequately stay well.

The other issue I have personally seen when visiting NH or ALF as a Hospice nurse or Home Health nurse is an aide bringing in a meal tray, putting it down in front of someone no longer mentally or physically able to self-eat. I've then seen them return some time later, comment "guess you weren't hungry" and take the tray away. Once while I sat with my terminally ill patient, I assisted the roommate.

Even in my years working in a hospital patients would leave with significant weight loss often for the same reasons. Request STRONGLY a dietician be consulted who should get blood work ordered some of which can indicate starvation.

In this time of Covid, it is so difficult not to be able to be present to feed one's loved one. Best of luck
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Reply to Waterspirit
KaleyBug Jan 24, 2021
Your experience is what I have seen also
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