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My dear mom has been in the hospital since Friday. She has late stage Alzheimer’s. She’s 87. She had other medical issues than landed her in the hospital on Friday. She had a myriad of medical issues to deal with. Today she has fluid in her lungs and they suspect she is aspirating. They also suspect her heart isn’t working as it should. She’s on lasix. We are not going to go ahead with a feeding tube. Does anyone have any advice on whether I should allow her to be discharged from hospital and back to nursing home or if I should dispute a discharge? I don’t want her going back to her nursing home as I don’t think she will get enough attention (short staffed as most of them are). I want her as comfortable as possible as I know what the outcome is. Any advice would be appreciated.

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Allmyheart: Thank you for the update and still praying for you.
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Update on June 28: mom is back in nursing home on hospice. She has actually improved. Keeping her comfortable now and following her lead with how things will
go. Thank you to everyone who took the time to respond and share experiences.
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AlvaDeer Jul 1, 2019
Thank you so much for your update. We don't always get them on the forum and I so often wonder about all the people out there trying to deal with what all are dealing with. Glad of this news, and the "follow her lead" is lovely.
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Praying...
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As I think has already been suggested I would talk to the discharge coordinator and perhaps her personal doctor (the one most involved in her care) about the Hospice options. I think there are variations depending on the area but often there are several Hospice providers to choose from even which may have differing options and ways of working so getting information/guidance from several sources is a good idea to try and get a handle on everything available. Then you go to the coverage and these people will know about that too as will the Hospice elevator that comes to evaluate and discuss the options, no reason you cant "interview" more than one. You may find that going back to the NH and caregivers you all know, somewhat familiar to her, with additional Hospice care is the best option as moves and change can be so hard on patients but you might also decide that making one last move from the Hospital to a full time Hospice facility is right. You obviously care a lot and want the best possible experience with this end of life for all of you so if you do your homework and talk to people there the decision will come to you.

My thought's are with you and your family.
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Allmyheart Jun 28, 2019
Thanks you very much for your response.
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You guys are lucky to live in places where hospice is a facility with 24/7 care. Here it's home care with a nurse stopping by 1 or 2 times a week. Maybe a home aid for bathing once a week. I'm not seeing the big benefit to home hospice. Can someone tell me what I'm missing?
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Terrycc Jun 27, 2019
One big thing with hospice is that they provided you with the medication you need to keep your love one comfortable. They also provide a 24/7 hot line. And when your love one does pass they send a nurse to pronounce and then contact a funeral home of your choice to get the departed. It is a much better way to die.
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As others have suggested, it is time for hospice. Not sure where you are located but in NJ we have lots of hospices that offer different services in different locations. Some follow the family for months after the patient has passed. One is on the floor of one of our local hospitals and is decorated like home. Your hospital social worker can make suggestions and put you in touch with several so speak with her/him as soon as possible.
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I was my husband's caregiver through his Alzheimer's. He declined while in a locked memory unit here in Iowa. Sent to the hospital and declined further. Finally i put him in hospice in the Iowa town I live in. It did not look or feel like a hospital. The interior felt and was decorated like a home with some non-home accomendations. Staff was on duty 24/7 in adequate numbers to check on patients every 2 hours or so, even if emergency occurred. It is affiliated with the hospital here but located blocks away and funded by a wealthy donor. I was very happy with the care he received there for the 2 plus weeks he still lived. A staff member even called to check on me after his passing for 3 months back in 2016. Go visit hospices to see if there is one you like with adequate staff. Talk to others who have gone through a family member passing. This situation can be made a little easier on the family with a good hospice. Additionally Medicare pays for hospice. Hospice is not the same as a hospital. My sympathies to your family. Elizabeth
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I think you should consider doing as others have suggested. Take her back to the nursing home that has staff that know her, bring in hospice services for extra support and take turns with family being with her. That is what we did for my grandmother and it worked well for us.
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Hospitals are petri dishes! Move to the NH may be advisable.
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AlvaDeer Jul 1, 2019
You are so right.
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Hospice is not a place, it is a service offered by insurance companies. And in my experience hospice does not offer 24/7 physical care. When my dad was "in hospice" a nurse did a physical assessment, gave us phone numbers to call if there was a problem, and direction on what to do when he died. The family was responsible for doing or finding home care to feed, bath, clean, etc.

It seemed their principle roll was monitoring and providing drugs. In fact that was the first thing the next rose did, locate and dispose of medications!

Now, hospice will attend a patient in a nursing home, but the home itself will need to provide the physical care. Hospice supervises and makes recommendations but no hands-on care.

I suggest you contact your insurance company and discuss this with them.
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Allmyheart Jun 26, 2019
Thank you for sharing your experience.
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Hospitals are in the mist of changing their "profile" or the way they operate . Less than 10% of hospital patients die in Hospitals anymore and most of those are due to operations and complications, why? it bad business to lose patients not good for business hard fact but true. When it is time they will call hospice or suggest the family make the call , in home or hospice facility depends on you and family. Either way hospices will be there 24 /7 even at home there will a hospice member there. they are educated to the finial stages of life and will prepare you when the time comes.

It sounds at this point that hospice is the way to go and at home in my opinion. Nursing homes show little attention, the sole purpose of hospice is caring for people in the last days, as well family survivors
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Allmyheart Jun 26, 2019
Thank you for your response. I will be with her as much as possible to make sure she is comfortable.
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It's time for hospice. Medicare will not cover dying care in hospital, and so dispute will waste your time. Now get the care she needs. I am very thankful you will not be using the tube to feed. The end result at this point is diarrhea, possible restraint because tubes are pulled out and if placed down throat can displace, feeding into the lungs and killing quickly with aspiration pneumonia or slowly with bedsores and diarrhea. You have recognized you are dealing with end of life. There will be a way to incorporate hospice care or to have her moved someplace other than the nursing home. But I think hospital is not an option. She should now almost certainly be given medication hospice can administer for her comfort.
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Allmyheart Jun 26, 2019
Thank you. Feeding tube was something we decided years ago that we wouldn’t do. I had not thought about the potential negative side effects so I’m thankful for this decision.
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The feeding tube will prolong her life but she will certainly die. It is not a cure. She will have some pain plus increased infections and skin breakdown because now you add wound care. Has it crossed your mind that she will attempt to pull it out? It may mean her hands will be mitted. Her hospital stay will be limited for a few days and that is it. The more life prolonging devices that you add, may require a different nursing home. There will be a point that you will not have a choice where she ends up because he pool of facilities will get smaller.
I too recommend only hospice care. Even if you can feed her, she can still aspirate saliva. You are removing from her all the joys of eating and drinking forever.
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cwillie Jun 25, 2019
Uhm, Allmyheart said "We are not going to go ahead with a feeding tube."
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I am in Canada, so who pays what for care is different, but I can tell you about my step dad.

He went into the hospital in mid October 2018. We thought he had had a stroke. It took a week to determine that he had not had a stroke, but he did have previously undiagnosed cancer they had spread all over.

After a a few weeks when it had been determined that there was no treatment only palliative care options, Mum was being pressured to have him come home. Home Care was offered, but it would not have been 24/7 and at 84 Mum could not manage having a hospital bed in her living room.

Luckily the doctor was very sympathetic and knowing SD did not have much time put off discharging him. He died in hospital with Mum and I at his side.

This allowed Mum to be with him, but not be his care giver. We had nursing staff available 24/7, and the funeral home picked him up after death.
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Allmyheart Jun 26, 2019
Sorry for your loss. We are from Canada. Sometimes I wish we hadn’t moved to the states. But here we are. Thank you for your response.
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My best advice is ask the hospital social worker to call a HOSPICE FOR YOU !! ASAP THEY WILL HELP !! I SEND PRAYERS AND HUGS
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Allmyheart Jun 26, 2019
Thank you for your prayers. I’ve been in contact with Hospice today.
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Perhaps it is time to put her in Hospice. To me, that would be the best option...for her.
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Allmyheart Jun 26, 2019
Thank you for your response.
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I don't know what geographical area you are in but I think you should consider Hospice care. I'm sure this is a very difficult time for you. You are in my thoughts and prayers.
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Allmyheart Jun 26, 2019
Thank you. It was a tough weekend but she is bouncing back a bit. After seeing how uncomfortable she was with all the treatments this weekend it solidified my decision to focus on her comfort only. We may have her for a few more days/weeks.
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I'm wondering about Hospice, but I know that services available vary from one geographical area to another and from one Hospice agency to another. You may be able to get some guidance from the social services dept. or social worker of the hospital. Sometimes staff are reluctant to mention Hospice because often family not really familiar with it become angry and horrified.
I personally want hospice services for me and/or my LOs as early as we could qualify. The focus is on comfort for the LO and for family.
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Allmyheart Jun 26, 2019
Thank you for your input. Comfort is our main focus.
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Talk to them about Hospice.
Many hospitals have a Hospice they work with and some Hospice have a floor or wing at the hospital or they can transfer her to the Hospice In Patient Unit.
Or
She can be discharged to the Nursing Home on Hospice and Hospice will see that she is taken care of there.
Any option you choose Hospice will see that she is comfortable and that her pain is managed.
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Allmyheart Jun 26, 2019
Thank you for your response.
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The hospital my MIL passed in had a hospice floor. It was covered 100% by Medicare. I would think a hospice house would be the equivalent.

When my mom passed, she was in a care home and hospice came in. Toward the end she also had 24/7 caregivers from an agency, that was paid by her.
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I will ask about Hospice. I was surprised they haven’t brought it up yet. Thank you for your response and kind words. I’ll take the hug. 🤗
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Would you want to take your mother home with you if possible and get hospice involved? Due to insurance regulations it might be difficult to keep her in the hospital. Caregiving can be difficult even when one has experience. I wonder if the nursing home allows family to stay with the patient and provide sleeping arrangements for you and your loved ones. I can certainly understand your concerns and wish you the best.
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Allmyheart Jun 24, 2019
Thanks for your response. I will ask if I can stay overnight. She has a recliner I could sleep in. Thank you for your kindness.
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Medicare will not pay for her to remain in the hospital. She will need to go back to the NH. You can then call Hospice in.
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My mom was on Hospice in her nursing home, she had a Hospice Aide for five hours a day..she passed on June 14th with the people who knew her the best and loved her.. I didn’t want her with strangers when her time came.
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Allmyheart Jun 24, 2019
Thank you for your advice. Although they are short staffed the people who work there are familiar to her so that would be comforting.
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I think in general a hospital is a terrible place for frail elders as their main focus is acute care, so for that reason I think hospice services at her NH could be preferable. Have you ever discussed end of life services at your mom's NH?
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Allmyheart Jun 24, 2019
I have not discussed it but I will contact them. I think ultimately I would like to be with her as much as possible even if hospice were to come in. This way I will be assured that her needs are being met. Thank you. It’s helps to talk about it to see things a little more clearly.
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I agree about asking for Hospice evaluation. They have been wonderful to my LO and me. They provide so much attention and ensure that the patient is not in pain. They come to the MC to see her several days a week for personal care and a nurse once weekly. They also provide a social worker. I can't say enough good things about how they have helped my LO so far.

Also, some of the Hospice organizations have centers where a person can be admitted for on site care. I have a friend who was discharged from hospital and went there since her condition from cancer was so severe. They told her husband that she had only a day or two to live and they were right. The facility was lovely with accommodations for the family on site.
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Allmyheart Jun 24, 2019
Thank you for your advice. And I’m sorry about your friend.
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Medicare will not pay for the hospice hospital facility, but can Mom afford to self pay? This would be the very best place for her now.

she should be on hospice. Ask for recommendations,

can you bring her home with 2 aids for 16 hours a day...can Mom pay for this?

my Mom was home to the end. I have two great aides that were there each 8 hours. Plus hospice was sending an aide every other day to bath and care for Mom...and the nurse was there every day for a couple hours during the last week.

i do not know that they would provide that level of care in a nursing home...since the family is not in 24 hours attendance.
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Allmyheart Jun 24, 2019
Thank your for your response. It’s getting clearer to me that I want to be with her as much as possible. If I’m with her aunt can get the help at the NH when she needs it.
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Have you spoken to anyone about Hospice services?

Ask especially if there are any hospice organizations with dedicated "hospice house" facilities.

I'm so sorry you're going through this. (((((Hugs)))))
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Allmyheart Jun 24, 2019
Thank your for your response and the hug 🤗
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