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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?

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If a resident is on hospice, the facility will usually allow visitors. Is your mother on hospice yet? If not, I'd call her PCP immediately and ask for an evaluation. Find out from the ED if you can come in for a visit once she's on hospice. If not, then your only option is to take her home with you, unfortunately. The Memory Care ED has the final say on who can and cannot visit the residents, I'm afraid. My mother is in one and they're not allowing visitors either, except by window visits or if hospice has been ordered and a resident is actively dying.

If you do decide to take your mom home, be sure to get hospice involved because you'll have a lot on your hands and they can be very helpful

I'm so sorry for all the grief you're going through. Sending you a hug and prayer, dear woman
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Floridagirl6 Aug 2020
Thank you Lealonnie1!
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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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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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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 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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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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Dear "Floridagirl6,"

I am so sorry you are finding yourself in such a heartbreaking situation. The pandemic has certainly wreaked havoc on all our lives causing inconsistencies from state to state, place to place.

I'm curious if your mom is under hospice care within the facility. Also, is she being given any type of medication that may be making her sedated in any way to give the illusion that she's slipping away?

At my mom's new facility in the memory care wing due to nearly dying of severe dehydration and getting COVID, I've been unable to see her in person since March 13th. However, when we did move her to this facility, I was told by our Administrator/Director that should my mom be near death, I would be allowed to come into the facility to be with her. So it's appalling to me that in your situation it's not the case.

Can you call your state's Ombudsman because you seem to be getting nowhere fast with the director on your own - they intercede on behalf of families when there are issues with the facility. They should be able to give you guidance or may even speak with the director on your behalf. In our state, the major cities have their own Ombudsman assigned to that specific city as they are more familiar with the facilities within their designated area. I had to contact ours several times in the last three months with our situation.

I will keep you in my thoughts and prayers that you will be granted the ability to be by your mom's side in her final moments and I hope you will let us know what transpires!
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Floridagirl6 Aug 2020
Thank you NobodyGetsIt, for all your great info/suggestions and kind words. they are greatly appreciated!
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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 2020
Thank you for the heads up, I'll write that down in my notes.
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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 2020
Really? Now is not the time for "should have" and "would still be" statements. Very insensitive of 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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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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