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My mom is in the end stages of Dementia, living at a Memory Care Facility within a mile of my home...Due to Covid-19; I have not been able to see her since March 17th (I used to see her 2x daily (and she had been thriving), except on Sundays (my brother would visit then) and am fortunate to FaceTime with her 6 days a week; however, I can feel her slipping away from me more and more every second of every minute of every conversation every time I talk to her.
I am grateful to have all those FaceTime memories, those bleeps of Mom but I can feel the end is nearing. I went and spoke with the Executive Director early today begging him to let me spend time with my mom before she loses her battle. I can't bear the thought of her not being there for her when she's struggling with everything. This is slowly killing me!! I am at a loss.
Executive Director just called and said So, sorry we can't let you see her but, I have to tell you the nurse called her Dr today because she's lost her appetite and you do have the option to take her home. I asked how many meals she had to miss before I could see her again... to which he said they would keep us posted. REALLY?? That's the best you can do! Help Me!!! Who has the final word at a Facility?

I would bring her home. And get her on hospice. They are a great help with bringing in hospital equipment in for you to use and some other personal supplies. Their guidance is valuable to you.
I have been living with my Dad for the last 3 years or so. When his level of care was get more than his quality of life. That’s what I did with my Dad.
I look at hospice as a fork in the road. I called Sutter hospice. Just knowing I and he had the control, is priceless. My father passed away in his home having contact with friends and family in communication with him.
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Is mom receiving hospice care? Ask if she can be assessed for this. Hospice may be able to tell you her current status and this info can help her memory care facility make better decisions for your visits.
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Floridagirl6 Aug 7, 2020
Thank you. We are in the process of having her assessed; the MCF has given us 4 different versions of my moms eating habits (over same time frame) since Monday. Facility has been pretty good with a few exceptions but, their communication is the pits.
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Floridagirl- You really need to escalate this - I just lost my mother- Alz - COVID as secondary. My mom’s place received permission from their corporate and allowed me and my brother to visit with her for the week leading up to her passing- full PPE of course- and they let us stay with her as long as we wanted. My point being, If we were able to comfort my mom with COVID - you certainly should be allowed, and my guess is the facility just needs to get off their bum bum and make some calls. And yes- was tested and we all came back COVID free
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Floridagirl6 Aug 7, 2020
Thanks. I am trying to get her seen by her dr due to all the different versions of whats going on with my mom that we've gotten. I had them weigh her yesterday during our FaceTime and she's lost 13 pounds. It took 4 days to get her weight, now I think I know why.
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The CDC guidelines say that families can be admitted in urgent or emergency situation. If your mom is dying I would classify that as an urgent or emergency situation. These baboons running these places probably don't have the faintest idea what the guidelines say; they are just going by what another idiot with the county declares. But supposedly, the CDC has the final say. I would contact the Administrator again and show him what the CDC says and that if he doesn't let you see your mom before she dies, you will be contacting your attorney. If your mom is dying anyway, are they afraid you are going to kill her with Covid? What nonsense!
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Floridagirl6 Aug 7, 2020
I am currently awaiting my Covid-19 results, I have been quarantined since the facility closed in March. With the exception of dropping giftbags and snacks every other day for mom at the front door and my once a week grocery stop at 7am... I have only been out (with mask on and socially distancing) a handful of other times. I wanted to be sure as I would be devastated if I got anyone sick.
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Imho, perhaps she should be on Hospice Care. Prayers sent to you.
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Floridagirl6 Aug 7, 2020
Thank you!
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These facilities simply cannot afford to let people come in because covid is too risky to the other patients. Can you take her home? Could the money used for memory care be used to help you with in home care? Things will ease up at some point, but with rising numbers of cases in the US it's hard to tell when that will be.

Your decision has to be based on what I always use - what can you live with? If you want to be near her, your home (or another sibling/relative) is really your only option at this point. You can also request hospice assistance in your home to get some nursing care and possibly other help via her medicare or insurance.
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Davenport Aug 6, 2020
Hello, FloridaGirl and 2cents : ) I agree that my go-to as a caretaker when making decisions is to ponder "what can I live with". Now, this isn't a simple and quick 'this' or 'that' by any means--it's takes days for me to go deep within--and even that usually feels somewhat unsatisfying, as for me, I've not been blessed with the burning bush 'right' answers : )

FloridaGirl, I don't know your personal situation, but I've got two 'absent' sisters, and no matter the decision I make, I expect to be criticized because everyone's level of what they can live with is unique. I've grown up and learned about myself a LOT since I've taken on this 'job' --and for that I am grateful. My best to you in this difficult time.
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Prayers go out to you and your mom. We were able to keep my mother in her own place . We were all local . All 4 of us kids helped . There was someone with her all the time. It took about 2 weeks before she passed. When Hospice And Visiting Nurses came in they helped a lot .. They ordered the hospital bed . They ordered medication and it was delivered to the house. They explained the the lack of appetite was the bodies way of saying , “I can no longer precess it “ . They walked us thru the final steps of life making it easier because we knew what to expect . The nurses came every morning to check on her and get her ready for the day . They ordered the necessary pain meds to keep here comfortable.. We were still able to get her to the bathroom .. On the day we put diapers on her was the day she passed .. She was really not responsive for the last week .. We talked to her a lot about funny things that happened when we were growing up . We were not sure she could even hear but it made it a bit easier for us ..
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Davenport Aug 6, 2020
God bless hospice! Thanks so much Nanulinda for sharing your experience. And God bless you and your siblings.
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Get her admitted to hospice ASAP. At least at my dad’s facility, if the patient was on hospice and declared imminent, then family could see him. Call her doctor and get him or her to order a hospice evaluation.
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also I thought of something else.  I heard and read that the hearing is the last thing to go when someone passes (not sure how anyone knows this), but when in the room with your mother when you go to see her, I pray that words that are spoken are good words as the "passing family member" will hear this.  We all want our family members to pass peacefully.  Again, praying that all goes well and wishing you luck in seeing her before she passes.  God be with you.
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I know what you mean.  We saw my father around the same time as you mentioned, when they shut things down.  My father also had dementia but sometimes would recognize us and other times not so much.  Where my father was located, they would call us for when anything changed.  When he lost about 10 pounds in a two period the nurse called and let me know.  The last week, she called again and said he had stopped eating for one day, plus he had lost another 7 pounds.  One morning she called and said that he did not eat again and she could tell that it wouldn't be long before he passed and suggested that we come in.  We did go in (full gear of gown, facial masks, hand sanitized, etc) to see him, he was resting comfortably but not knowing we were there (or at least not to our knowledge).  I told him to rest peacefully and 3 hours later they called and said he passed.  Now I am sure that IF and WHEN you mother (IF you let her stay there), they should be contacting you when the time is near.  IF you decide to bring her home, are you equipped to handle hygienic care IF she doesn't pass for another week?  just asking.  I think most places (IF they keep an eye on your mother) and see that she is getting close......they will call you to come in and visit.  Remember, they have to protect all the other residents there too.  I wish you luck.
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My brother and I just went through this with our mom who was at the end stage of Alzheimer's for several years. Two years ago, my brother received a call from the Executive Manager and they stated our mom had quit eating and they have contacted Hospice to review her and they felt the end was near. Since I lived out of state (700 miles) my brother said it looks like it is any day now, just be prepare to come up. Well after a month of touch and go our mom bounced back and started eating and gain a couple of pounds and started sitting in her wheel chair again. She did well for 2 years and then this May the same thing happened again only she did not bounce back, she passed away. The Executive Manager called my brother and said they had called Hospice and Hospice stated this was the end that mom was unresponsive and they were allowing one person to come in to be with her. My brother (wearing a mask) went and sat with her that day and night and left the next morning to get something to eat, shower and change clothes before going back up and while he was gone she passed. The staff and hospice told my brother to not feel bad or guilty that he left for a couple of hours that this is pretty common that they pass when they are be alone. Hospice told him they believe they do not want to pass in front of family or friends that it may be too hard on them and they wait until they leave then they pass.

The management does have last say who can come and go inside the facility. My brother only got to see our mom for one day before she passed. You need to realize if you bring your mom home that there is a chance she may bounce back and possibility live another year or more. Are you ready to take care of her of her every need for that amount of time 24/7? Ask the Director if she should become bedridden and to what point would they allow you to come in to be with her before she passes. I believe that they will allow one person to come in as long as all precautions are taken when it is at the end of their life. I know it is hard especially during this pandemic, but remember it is for everyone's protection, as hard as it is when is comes to family.
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As far as I know, facilities under the law must allow someone to see someone who is dying. Seek help on this immediately from the Office on Aging or contact your local state representative or senator for help. You should be able to see her somehow.
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In our facility, a family member is permitted to be with their loved one as they near death. This person must, of course, submit to screening and wear appropriate masks. Currently, Ohio Public Health allows this provision.
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I'm so sorry. This may be a radical thought, but the caregivers go out into the public and go back in to your mom's room, why not you when you know she is so close to the end anyway? But just so you know, it may not offer you the peace you think. My brother, who lives near mom's NH, was able to go in person to see mom and I phoned in on FaceTime. With my brother masked and shielded at a distance holding his phone up, it only disturbed my mother. So close, yet so far. No hugs, no real faces to see, muffled conversation, etc. She was fully aware of the pandemic, but that reality of it was just too much. Mom passed away shortly after. However, if I were you, I'd attempt to appeal to the administrator to see your mom in a private room. At this point, what's the worse that can happen to her?
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My mother in law faced same problem. A light eater normally, eventually she declined to eat and the caretakers would simply remove her meal after 15 minutes. However, one in particular would sit with her and patiently feed her
over an hours time and she would eventually eat everything. We also turned to
hospice in the last few weeks of life and they were wonderful and she passed away at home. The nursing center generally meant well but their staff had neither the time or patience to deal with the eating problem.
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AmiraKazi Aug 6, 2020
Totally agree with you, I knew a Carer who would not even take shower, for some pay is more important than health of elderly
this was during COVID 19
everyday we just prayed for elders in care homes
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I hate to say it but they're awful. I went and lit into my dads nursing home. They let someone take his phone without consulting me his daughter primary caregiver and POA. The also talked to my brother without getting consent they never saw him or talked tut o him b4 and they talked about medical stuff too which no one called me and they should have c done a conference call to get my permission & talk about my father. It's the principal bc I'd been asking for th as since my dad got there for rehab.
My point is, if you can care for him at home I would. I'm getting ready to.
Check with whatever resources are in your town and see about getting a medical waiver to help you with expenses. If you have a military family check with the Veterans Administration in your area for programs to help, they can get you a care caregiver, hours vary but it's better than nothing and we talk about what care is needed or any other help. Become friends with them.
I would bring her home, until then take her some food or sauce for her food so when she gets fed & wants to eat she'll eat some.
I never even met the doctor wonder if they have one. Keep Calling the Director &/or director of nursing until you get her home, talk to her primary nurse become friends so she'll really tell you what's going on.The Covid certainly doesn't help.
Photogal 425 said to talk to Hospice, I think I will too as I never thought to do that.
God bless, I Hope's this helps.
Take her home.
Be sure to get your Power of Attorney, there are a few other documents you may want to get if you don't have then yet. I can't think of them at the moment. I'll try to remember to post them later or remind me .
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Dear Floridagirl6,

My heart aches for you. My advice is to contact hospice, get your home set up and bring your Mom home. Hospice will help every step of the way. Not only for your mom but for your family too. Best Wishes for your decision.
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Floridagirl6 Aug 7, 2020
Thank you!
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Sorry you are experiencing this. COVID-19 is real and a real danger to seniors. That is the reason you are not being allowed to visit. Facilities train their staff and also have adequate supplies to keep the staff from transmitting COVID. They can not control visitors in the same way. If your mom is nearing the end, maybe hospice at home is a better option. Hospice nurses and home health care aides could come to the house to help keep your mom comfortable. It may even be paid by mom's insurance.
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Get her OUT of the nursing home. Those environments alone will kill a person's soul and they will give up on living.
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take her home. Nursing home patients are NOT fed by staff very well..and sometimes they don't feed them at all and chart "refused". With too many patients and not enough staff, that is often the case.

Also, people with end-stage ALzheimer's simply forgot how to swallow. You can always get a feeding tube. It kept my mom alive a long time and I did not have to watch her die of dehydration which can take weeks. Check residuals to see if she is digesting properly. Mom never had a problem with it, but when started retaining feeding and water I stopped--but she was dying of liver failure from cancer. Alzheimer's did NOT kill mom. Cancer did...but she died without pain, and medications are very easy to give with a feeding tube.
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wolflover451 Aug 6, 2020
sorry to hear of your bad experience with the NH.  But not NH are the same.  My father had been in one for 5 1/2 years and they were wonderful.  Sure some nights they might have been short staffed, but I was called any time anything happened (even a small bruise on his finger).  And they would sit and feed those that had problems feeding themselves.  The NH where my father was would also do occupational therapy to help them retain their swallowing capabilities as long as they could, when they couldn't do it that well, they basically pureed their food so it would go down really easy.  People have to check out places before putting loved ones into a home.  Not saying that you didn't, but not all NH are bad.
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Unfortunately, your only option if you want to spend time with her is to bring her home.  This is a very sad and frustrating time for everyone.  I am not sure my mom really knows who I am at this point.  It is just so unbelievable to me that this is how my moms life is going to end...by herself and not knowing anyone around her.  Who could have predicted this.  I work full time and no where near retirement age, so bringing my mom home is not an option for me.  I'm so sorry that you can't see you mom.
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This is a difficult situation. My FIL died I’m facility in May. We would have been allowed to see him when he was actively dying but he was unresponsive and as we had not seen him for 2 months, I felt seeing him at that point would more disruptive than helpful.

please understand what hospice will provide, either at home or in facility. They are not providing regular nursing or hospice aide visits. They can still provide equipment but if you bring her home, you will be providing care 24/7. You may be able to hire caregivers but that is private pay. She should qualify for hospice but if she really has not eaten or taken any liquids for 2 day’s , she may not have much time left. This may not reverse if she is at home. If she won’t swallow, then you will need to prepare yourself for a few days of watching her die. She may rally of course. They should send out urinalysis ASAP just to be sure. If UTI is present, treatment may make a difference.

It is very sad the way people’s lives have ended due to this virus but even had you been able to keep seeing her, the “slipping away” is how it happens.
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Not eating means the end is near. As long as she can still swallow, and take liquids, you have some time. I'd get her out of there fast.
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cetude Aug 6, 2020
Not necessarily--it can also mean they forgot how to swallow. OR staff is not feeding them well. Too many patients
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I am so sorry you or anyone is going through this. My brother is in a NH and I can only see him for a window visit. He is so depressed and just down. His dementia has advanced in the last 5 months. I would say lack of mental stimulation is a huge contributor to depression. Is it at all possible she is depressed? between depression and a UTI she would be very sick.
Under no circumstances will they allow anyone to visit other than medical or hospice in the NH my brother is in. Interesting because a hospice worker brought the virus into the NH and they lost 6 patient's. My brother tested positive, but thanks to God, he was asymptomatic.
If you haven't already, call Hospice. They will know exactly what you can and can not do. I would just take her home and have home care. Medicare covers most of it and hospice is there as well. When my husband was dying I brought him home when it got to that point. It made me feel better having him in the comforts of his home. We set the dining room up as a bedroom for him with the hospital bed and all the necessary equipment needed. You do have limited choices. Make whatever decisions you need to make and keep yourself in the emotion loop. You need your strength. Prayers to your Mom and you.
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The Loniness and Depression Kills more than Covid.

you should have taken her out of the home during the Civid and she would still be striving.

I would go get her today znd have her brought to your home and I can guarantee you she'll start eating again.

as of now. She doesn't have the desire to live, so she won't.
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graygrammie Aug 6, 2020
Really? Now is not the time for "should have" and "would still be" statements. Very insensitive of you.
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I know it must be very, very hard for you but your visit to your mother would potentially expose every other resident to a potentially fatal virus. My father is in an assisted living facility with a memory care wing. They allow NO visitors to residents, even out on the patio. If you are on hospice they allow limited visitors using special protocols. You must be officially on hospice, nearing death, and again, only limited visitors. This is on the advice of our state health commission.
You do have the right to remove your mother from the facility and to bring her to your house or another facility if one will accept her during this pandemic period. This situation is so hard on everyone and everyone's nerves are fraying. Although I know you see the facility director as being unfair to you because you desperately want to see your mother from my perspective the facility director is doing everything he/she can to keep all the residents safe. Different side, same coin.
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YOU DO HAVE THE OPTION TO TAKE HER HOME.

BEFORE YOU DECIDE ON THAT... MAKE SURE THERE IS NO NEGLIGENCE ON THEIR PART... CHECK HER OUT FOR BED SORES = PRESSURE SORES AND UTI..; If that person is saying ; YOU HAVE THE OPTION.... THEY MAY HAVE GIVEN HER AN ISSUE OR PROBLEM, which they would not want to admit.

praying for you. good luck
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Floridagirl6 Aug 4, 2020
Thank you for the heads up, I'll write that down in my notes.
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TELL PROFESSIONAL DOCTOR, YOU WANT HER TESTED FOR UTI.

Urinary Tract Infections can go from 0 to 100 in a very quick moment. This can cause all sorts of havoc on the mind, brain, blood stream, bladder, kidneys, and if to goes that far.... VERY DANGEROUS, VERY QUICKLY.

Once that gets into the blood stream, things can happen so fast, you don't know what has hit them.

Since they are so adamant about YOU NOT VISITING, They may be trying to hide something?

Again, I am not a professional, but do look at your options
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Floridagirl6 Aug 4, 2020
Thanks again for all this info, it's greatly appreciated.
The ED said they didn't feel she was slipping away, I said how much time have you spent with my mom in last 72 hours; to which I received a change of subject. I understand that it's not his job to CareGive to my mom but, I do question his ability to determine how my mom is doing mentally and emotionally. In my experience with him and our conversations over the past year; he has proven to me that although I've being happy with Moms care (for the most part), there is an absolute issue with communication between CG's-Nurses-Admin-and ED and families. My mom is not yet in hospice although her doctor has been called due to the fact she hasn't eaten breakfast for 2 days, we are to get an update on her weight and meal consumption on Thursday. I should clarify "slipping away", she's declining quickly and she obviously cannot understand why I can't see her. She seems to be losing the will to live and I know that the disease is progressing but, I really feel like our contact would help. We are considering bringing her home.
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This will be interesting to hear the outcome of the first visit...

Take your plastic disposable gloves, and do check her lower regions for bedsores, pull out her diaper or down, and check. and do this to her feet, elbows, side of feet, and hips or other areas of contact.

Perhaps, she has them, and that is why they wont let you see her?

JUST TELL SOCIAL WORKER THAT SHE IN IMMOBILE AND CANNOT MOVE, YOU ARE CONCERNED ABOUT PRESSURE SORES, ESPECIALLY SINCE YOU ARE NOT ALLOWED TO CHECK IN ON HER. You are not the professional.

THEY WILL NOT DENY THE PROFESSIONAL TO CHECK HER OUT...
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Floridagirl6 Aug 4, 2020
Wow moms dr office just called and they told me, they received a message from moms MCF and were told she hadn't eaten or drank anything in 2 days. They told us it was 2 breakfasts.
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PLEASE CALL INSURANCE - You cannot get Palliative care or HOSPICE without an evaluation first. It took me 4 days to get someone in to EVALUATE.... He strongly told me, it was a 1 and only TIME VISIT. DO I UNDERSTAND? Yes, I do. This is not my first time. Once he saw her pressure sores, he said he will be coming back until it is clear. STAGE 4 BEDSORE,,, RIGHT UNDER MY NOSE. I DID NOT LOOK AT HER FEET. :( She also had a STAGE 1 on her bottom.

ON THAT NOTE: TELL INSURANCE,Where? A few places seemed to be a bit "pink" can you come out and take a look?

That my friend, can be called CARE NEGLIGENCE. and SHOULD BE EVALUATED. Usually in the bottom area. Pressure sores = bed sores, should your mom be Immobile. Does she have mobility issues? Could she have been placed in a position that may possibly cause her not be physically able to turn, to relieve pressure on a certain spot, like the tail bone area, or the feet or heels, or elbow, or other places on body?

YOU DON'T KNOW -- YOU ARE NOT A MEDICAL PROFESSIONAL,

YOU WANT YOUR MOM EVALUATED FOR IN HOME OR HOSPICE CARE.
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