My mom is in the end stages of Dementia, living at a Memory Care Facility within a mile of my home. Who has final say on my visit?

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!

They will let you see her if she is dying. That pretty much is the rules now in most places. She gave you the only option she has, which is to take your Mom home. She cannot let you visit. If she lets you visit because there is "need" can you imagine the uproar when others found out that you are visiting and they cannot? And that is ignoring the real reason you cannot visit, because if you brought in covid it could turn the place into a death mill. So the rules are set, and heartbreaking they are, especially for someone as faithful and loving as you, who visited your Mom so often.
I will tell you of something I heard on NPR. Woman with husband, in 60s, early onset Alzheimer's who visited him always every evening and watched TV sitting on the bed with him. And then "This", the Covid. She went and asked if she could work there, doing ANYTHING. Now she does. She does dishwashing, sweeping and cleaning, and she is tested and provided the same PPD gear as other workers. And she can sit with her husband each night. She said that she found others who were doing this where they would allow it. You might try this. But a bad or adversarial relationship with the Director who is doing the job she has to (and likely scared to death daily) will go against both you and Mom.
I can't think of anything else. I am so sorry. And so glad that Mom is one of those who can figure out facetime. Wish I could!

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

I agree with leilonnie1 that you need to get hospice involved. My late aunt, who passed away in March, was in hospice and her daughters were able to visit her and be with with her when she passed. This was in New York, when the virus was getting to the highest peak of any other state.

Being in FL right now is probably one of the biggest issues with trying to get in to visit. Virus is running rampart through many areas there!

Although it isn't the same, can you visit at her window? I can't with my mother, as her room faces an interior garden area, no access from outside.

If not, can you request a visit outside? They locked down mom's facility around 3/16 (it is IL/AL/MC), but recently have been allowing short visits outside - still have to wear masks and maintain distance, but it's better than nothing! If she can't walk, they could wheel her out to see you.

This kind of visit with my mother will be difficult. She has almost no hearing. With that and dementia it is hard to "visit" and "chat"... add in the mask and distance, it likely won't be much of a visit! I did ask if they had a white board we could use. When I was able to visit, I got her a Boogie Board (LCD screen that you write on with stylus and clear with a button) for writing stuff I couldn't pantomime. It worked great, but it is small enough that we won't be able to use that outside, esp since we both have to handle it. It would be nice if I could go this week - it is her b'day, so some cupcakes, coffee, ice cream, cards and maybe some small gifts should brighten her day anyway! Have to wait for this Tropical Storm now to pass before anything can be planned! What's NEXT!?!?!?

A straight answer from someone would be nice, but then again, we don't have crystal balls, so who knows when your mother's time is up? Although she may appear to be slipping during the phone visits, perhaps it is due to lack of/reduced activity and socialization. Hopefully you can have her checked, by doc, hospice, whoever, and they might be able to say yes or no. Unless it is really clear she is heading downhill quickly, taking her home may work for you, esp if you can arrange in-home help that soon. If they determine she is just in a funk and not actively dying, I would hesitate taking her into your home. If she were to rally and last for more years, how long would you have to provide the care yourself? Once out of the facility, it will be hard to get her back in, if things don't work out.

Probably depends on how much weight she's losing rather than the actual amount of meals she misses.

Could you bring her home with the support of hospice? Could that be made manageable?

So, a mile away, EX.director wants you to take her home, Call your social worker, DEMAND HOSPICE, (end of life - my mom graduated 3 times from hospice, then she went to heaven) If you cannot take care of her at home, CALL SOCIAL WORKER, ASK FOR EVALUATION. And Then THEY MAY SAY, IT IS OK FOR YOU TO VISIT MOM AT HER PLACE.
IF NOT, Hospice may offer to take care of her at your home.
This COVID THING IS CRAZY... Neighbor in our area died, spouse is ok. other neighbor family had to go get tested and quarantine till results came back.
If youPUT BOOTIES ON YOUR FEET, double glove, a cloth mask with a huge plastic guard over that, and hand sanitize in front of everyone: HOLD YOUR BREATH. CLOSE YOU EYES, AND RUN LIKE HELL TO MOM'S ROOM: I would think you are ok. AND IF YOU GET HOSPICE IN, THAT MAY GIVE YOU A LEG UP..
good luck: CALL SOCIAL WORKER AND HOSPICE NOW. An operator should be able to answer. Who is her insurance? They should have a 800 number and an operator to answer calls. CALL HER INSURANCE NOW

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.

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...

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

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

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.

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.

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.

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.

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.

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.

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.

Get her OUT of the nursing home. Those environments alone will kill a person's soul and they will give up on living.

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.

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.

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 .

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.

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?

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.

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.

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.

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.

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.