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.
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.
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.
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.
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.
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.
Get the hospital social worker involved and either move her to another facility or get more help at home.
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.
When our residents are admitted they are quarantined in their room for 14 days. This can be devastating to their mental health as they are in a new environment, are often confused, and have limited interaction with other people.
Im not sure about your specific facility, but in ours all residents are encouraged to remain in their rooms more than pre covid. This is to help limit the chance of covid passing from one resident to another as quickly if it’s introduced into the facility. Having more residents in one area made it easier for staff to assess if they were drinking, eating well, and offered social interaction which often helps them to acclimate to the new facility and schedule.
I agree with having a care plan meeting with the facility, tell them the specific things you’re concerned about and offer strategies that you had seen work at home. You could also ask if they could do physical therapy, occupational therapy, and speech evaluations. Speech will look at cognition (which stage of dementia) and how well she is eating, drinking related to cognition, as well as any mechanical issues of swallowing. OT can look at any mobility issues related to her eating, drinking, toileting, and PT can look at her general mobility. All of these disciplines will offer strategies to the nursing staff to help care for your MIL. Knowing cognitive status is really important because as dementia progresses there’s a corresponding decline in desire and ability to eat, drink, move, etc. Knowing the stage that your MIL is in may help you to determine potential next steps.
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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.
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.
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.
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
They DO NOT help them eat or drink ...just the opposite. They KILLED my sister by not giving her any food or water for 4 days. She died of dehydration! They said she was actively dying (she was NOT dying ...had a seizure and recovered). The fact is they decided it was time for her to die and withheld all food and water. I was going to sue, but found out this is NOT uncommon and is a form of euthanasia. I am looking into starting a petition to STOP this! DO NOT LET THEM DO THIS TO YOUR MOTHER. By the time I found out what they were doing it was too late. This is a horrible way to die. Very painful and should be illegal. I thought it was, but it happens a lot. PROTECT YOUR MOM!
That being said, someone should take notice if a patient who is not dying has stopped getting enough nutrition or liquids. Encouragement and follow-through is then important. Only if the patient is in the final stages should that effort be stopped.
Talk to her doctor first, at hosp, to find out if her problems may require better care at the facility. Or perhaps more care/different care than she's getting. Then ask him to put those orders on her record upon release from hosp. It's very likely there's another doctor (or his PA) assigned to nursing home. Perhaps he can also send written record to that doctor. Then follow up with nursing home to find out what they will be doing to accommodate.
If you can't go inside the facility because of covid to observe on your own, you may need to call more often to ask questions specific to her care and document each conversation even if you have to record it. Anytime you have concerns, call and ask. If you can't get inside, it will take more daily conversations with her to know what is going on if she can communicate things to you. You might also check it out to see if you can hire a private health care provider to do in and be your eyes for you.
Covid is being brought in to the facility by employees more than likely. New patients should be quarantined upon arrival, so that would indicate spread is from employee/new patient or employee exposure when they are not at work.
May I suggest another view of your loved one's problems. She will not eat or drink enough - as she was doing before she arrived - and most likely continues to do now. If she was incontinent of bowel and bladder before she entered LTC, she is still going to be incontinent. Fecal incontinence can lead to more UTIs. Less fluid intake leads to UTIs, lower blood pressure, higher heart rates, and increased risk for falls. Unless a person is tied down (which is a huge no-no everywhere) you can not prevent falls from happening. If your loved one has osteoporosis, her bones will have thinned enough to fracture when she stands - and then she falls.
Every residential facility takes measure to prevent injuries to those prone to falling; ask to see their protocols. Ask to see their protocols for those who need snacks and extra fluids because of poor nutritional intake. Ask about how often she is bathed. If the information you read is satisfactory, it may be that your loved one would experience UTIs and/or falls/fractures in LTC or at home with family.
COVID exposure may or may not have anything to do with the LTC facility. If your loved one fell and was taken to the hospital for evaluation of a her fracture and treatment, she could have been exposed to COVID while there. A staff member or a new client could have COVID without symptoms and the rest of the clients would have gotten an exposure. CDC protocols are to reduce risk of exposure, but nothing can make that risk 0% - especially when you have many people together under one roof. Add to the fact that she is living with other people is her age, which puts her at risk of more serious disease. Unless you are willing to take your loved one home and never leave the house, you and she will most likely have several potential COVID exposures every week.
One of the problems with COVID is that it causes pneumonia. Unfortunately, this is how this disease works. Some people get mild symptoms and others can develop pneumonia, heart/vascular problems, digestive problems, neurological problems... It is hard to see your loved one get sick with this disease.
I don't believe that the LTC facility is not taking care of your loved one. I believe that she is facing the same problem LTC facilities all over the world are facing - keeping their residents healthy during a pandemic that seems to target them for worse disease. When the vaccine is available for her and yourselves, please get vaccinated.
If they did not eat, they were always welcome to order a sandwich later if they were hungry, along with snacks like cookies. As far as extra drinks, all I ever saw was punch. They had a few vending machines too.
My mom loves ice cream. She doesn’t have diabetes. She’s very thin so she is one who can indulge. I brought the individual cups of ice cream for her.
When I got them out of the freezer for mom, the other residents begged for one so I went to the store and bought tons for everyone and asked the nurses who couldn’t have them for health reasons.
Oh my gosh, I became very popular with the residents after that!
I believe they are mandated to record how much your mom eats and drinks. I agree with the suggestion that you ask for a family meeting on her care plan.
Once the vaccine has been widely distributed, I hope visitation will resume in care facilities. The families did so much more than just sit and chat. The loss of the family help with patient care plus the care restrictions caused by staff contracting or being exposed to CoVid are definitely affecting the care available to our elderly.