How do I help my Mom accept not coming home?

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This past Friday, my Mom's daycare (which also provides her health care and serves as her insurance, through Medicaid), called me to say they'd taken her to the ER, because she was listless and couldn't stand and when they stood her up, she fell over. I rushed over to the ER, only to find that the pneumonia that they'd said she had but were treating with antibiotics had gotten worse, and an x-ray showed not just the pneumonia, but also possible cancer (this has since been verified with a CT scan - she has nodules throughout her lungs and a mass near her heart). She was admitted to the hospital, where she's being treated for pneumonia. Obviously with moderate-to-severe Alzheimer's, we're not going to put her through biopsies and surgery/chemo/radiation for the cancer.

After 6/1/2014, she won't be with the daycare place that (A) failed to properly diagnose or treat her pneumonia and (B) won't give me enough home care to provide for her while I'm working, and she'll be going to a long-term care facility (to be named - the hospital's case managers are helping me find a bed for her by 6/1, to coincide with her discharge from the hospital). She'll start with some rehab to get her strength back - so she can get up out of bed or a chair by herself and stand, and hopefully walk, perhaps with a walker. Then, she'll move to the long-term care floors, either for dementia or cancer, whichever condition is creating the greatest need for care, and then, depending on the path the cancer takes, she'll go to hospice. All of this could take just months, or if the cancer is slow-growing/spreading, it could be a year or more.

Of course, every day when I visit the hospital, my mom is begging me, hourly (and sometimes more frequently) to take her home. She cries “I hate this place. I want to go home!” and it’s heartbreaking to hear. She’s so truly desperate and sad, but she can’t leave the hospital until the pneumonia’s cleared, and then she clearly can’t come home because she’s too weak and needs 24/7 care.

I have told her over and over that she can't go home until the pneumonia is cleared up and she's got her strength back - and for that, she'll be going to rehab after the hospital. I've never outright said "And then you'll come home once you're stronger," nor have I said, "And then you'll live in a nursing home, because I can't take care of you at home anymore." I would NEVER say the second one, and I don't want to tell a bold-faced lie and tell her the first story, either. The truth is, however, she’s completely incontinent (and has been, from the Alzheimer's) and with her increasing weakness, she’s not just a fall risk (as she’s been for some time due to a wobbly gait), but a fall-out-of-bed risk. She literally can’t be alone for any length of time, and I work 60+ hours a week.

SO MY QUESTION IS THIS: In the experience of those who’ve had to place someone in a nursing home, and the person was cognizant enough to know where they were and that home was someplace else, how long did it take for them to adjust to/accept their new circumstances and what did you do to help that adjustment happen? I’m planning to just keep extending the “you need to get stronger, so you’re still in rehab” story for as long as I can, and hopefully she’ll completely lose track of time (which she already does to some extent) and think it’s only been days or weeks and will stop begging to leave. But she very well may keep begging and crying, and believing that I’m the one “doing this to her” when in fact, the doctors have said she’s not a home-care candidate unless that care was 24 hours a day (which Medicare/Medicaid does not provide). We do NOT have the money to hire homecare workers on our own.

Any suggestions? I’m open to bending the truth, but I want her to believe what she’s hearing and not feel betrayed by the only family she has (me). I will visit daily, and hope that not being the person forcing her to change her soiled clothes, etc... every day (which she resents and literally fights) will help our relationship. I appreciate any feedback you guys have!

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Maybe the operative phrase should be "I hate this place" instead of "I want to go home" - do you think it is the best available for her? Is there any substance to her dislike of it?
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I, too, go through this every time I visit my mom in the Alz unit at the local SNF. I placed her there in February, when she because a severe wander and fall risk, became combative with me to the point of near-violence, etc. Broke my heart.

I DID tell her, when I had her transferred, that I could no longer care for her at home, nor could 24/7 nurses (a slight fib - she has long term care insurance, but not for in-home care) and so she needed to go someplace else. Rolled right off her, she absolutely did not process it at all.

So - my Plan A for why she was there was that I was traveling a lot and she needed the care they were providing. When Plan A wore thin, Plan B was that she had to stay there until her venous stasis ulcer was completely healed (we - doc, nurses, and I all figured she'd die from a UTI before that happened). When the thing started to heal, Plan B.1 was that Medicare was making her stay there. Now that it's nearly healed, we've devised Plan C, which is that her Atrial Fibrillation is too much of a risk for her to go home right now, that meds need to be tried, adjusted, etc. We're setting that in place now - before she starts packing her bags to come home - and, since that will never resolve (or she won't know it if it does), there's our final plan. Medicare will also "require" that she stay there until her a fib is resolved, just as they're "requiring" her to stay there until her wound is completely healed.

And..since she's been there, she's doing amazingly well. The routine and structure that they provide (and the staff is fabulous) is SO good for her - it's something that she just wouldn't allow me to provide for her at home. She's made a fast friend, eats well (more or less), is involved in multiple activities, is compliant - the only time she complains about coming home is when I'm there. Otherwise, she seems to be doing well and is relatively happy.

Someone prior to me mentioned this - I truly believe, too, that her going "home" is simply a concept to her in her mind. When she actually WAS home, the last two weeks she claimed she was going to run away and/or catch a bus back "home" to Michigan - a place she hasn't lived in 70 years. And when I talk about what I'm doing "at home" with landscaping or cleaning or whatever, she simply cannot remember the location of the room or what I'm talking about with the trees and such. She remembers the next door neighbor and his kids...but very little else about the neighborhood or house.
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Depending on how attached she is to whatever "home" would be, she might want to have hospice there and die there. I would. In NJ, hospice will set up wherever the patient "lives" so if you were to say My Mom now lives here as of a certain date, once you feel her time is close, they will bring hospital bed and equipment if you can clear a space and get manage to handle her toileting, which they will train you to do. This may be only a week or so, and might make all the difference in the world. I realize this may not be suitable in your case, but for some, that would be an option. We lived near water and she wanted to see it one last time, and not die in an antiseptic location in the presence of strangers. We were unable to do that because of a series of miscommunications about how much time they actually meant when they said "terminal." I hope your last months (or years) with your Mom are good ones.
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Keep doing what you've been doing and keep saying your need to be stronger, there are no words to describe what you are going through, but I believe you are doing whats right and eventually god will step in and help you when all is said and done, believe me if you don't believe, god bless and your in my prayers
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I am sorry to hear her health has deteriorated, however, tell her the truth. She will be very angry with you to learn later she will not be going home with you, so prepare her now while she can still talk and ask questions. The truth is she will die soon, and the sooner she knows, she can prepare for the inevitable. You can also prepare yourself, because I think this is more about you not wanting to hear her prognosis and not wanting to lose her. Our mothers were there for us, and now that she is coming to her end life you can honor her by telling her the truth. She will forget and you will have to remind her, but tell her the truth.
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you could also speak with the NH or AL case worker on how to approach that subject when she starts asking about going home. they should be able to give you some guidance, but my MIL would always ask or say she wanted to go home. I would say, when you get a little better and the doctor approves it. But just think, you have people to wait on you, they do your clothes, wash the dishes, you just enjoy the other people. that might help. good luck. I am sure I will be soon in that situation with my father, 91.
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I'm going through the same thing with my mother right now and I've just been answering her by saying, "You're not well enough to go home right now, Mama." She seems to understand that and it seems to satisfy her for the meantime. She used to ask to go to her home, but lately she's asked me to take her to her mother's house more and more - her mother has been dead for almost 40 years, but she doesn't remember that anymore.
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She is probably hospice qualifed already, and if it is possible to get enough support at home via that route, maybe you can give her what she wants. I'd be concerned she won't be able to shake the pneumonia if there is a lot of tumor growing in there, and may not be able to do much in rehab - but you will know as you watch her if it is too much too expect. Sorry this is happening, and probably a lot faster than you were expecting!

You absolutely can keep telling her you wish she was well enough to come home already (which I think would always be true), but you will find a "nicer" facility to take care of her, help her get stronger, etc. until then, bring favorite and familiar things to the setting for her, etc. When my mom went to inpatient hospice, I explained it was "a different kind of hospital" where they would focus on helping her feel better.
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Laurie - what I've found is that their wanting to "go home" is more than just leaving the IL, AL or NH and going back to their house, it is more of wanting to go back to who they were decades or years ago and the images they still have of themselves at the house when they were younger & vital. All of us are unrealistic about things but for those with dementia their baseline of reality is off due to dementia.

For my mom (NH now for 3+ years) when she starts to harp & fixate on something, the best thing to do for us is to do a conversation diversion. Mom just loved working in her yard and planting bulbs & I have in her room @ the NH 2 floral arrangements. They are my go to for diversion…like mom aren't these jonquils sort of statements. 80% of the time she takes the bait and moves to another conversation. Really trying to have a logical sequential conversation with my mom who has latter stage Lewy Body Dementia is just not gonna happen. Sometimes mom will lean forward (she's bedfast) and say "you know I live here now" so they do adapt & accept.

If you can Laurie try to speak with those doing mom's rehab. You want to clearly find out how mom's rehab is "progressing". If it's not or mom is being non-compliant, then Medicare (which is probably the one paying for her stay if she was a post hospitalization discharge to the NH for rehab) will stop paying. Mom will need to get NH Medicaid to pay for her stay. Depending on just how your state runs it's Medicaid program, mom may have to apply for NH Medicaid rather than just have her old Medicaid carry over. Ask at the facility so that you are not caught in having in a whirlwind to find all sorts of financials for NH Medicaid.

It sounds like mom could be a dual Medicare & Medicaid NH resident. If she can get on hospice that will be paid by Medicare and then her Medicaid will pay for her room & board daily costs @ the NH. My mom fell last June @ her NH and was placed on hospice. So its been a year now that she's on hospice and her care has really been great. The NH seem to love these residents as there are extra sets of hands to help in their care. The selection of hospice provider can be done by you (Medicare benefits are self-directed), so if you don't like one you can select another at any point in their care. I changed hospice providers the 2nd month in. For my mom;s NH there are like a dz different hospice groups that have clients at the facility. You might want to ask the hospice groups if they have a free-standing facility as your mom has cancer. In my mom's city an old Women's & Children's hospital is now a VITAS free-standing hospice and often for cancer patients who need pretty high dosage class 1 or 2 med's, having them there for end of life can be best. In my city, Compassus has one as a separate unit within Ocshner hospital. My mom will likely never need serious pain meds so she will stay @ her NH till the end but for those with cancers or major trauma's with lots of pain, moving them to that type of hospice for the "end" end of life can be a godsend. If your mom may be needing this, then selecting a hospice that can see her @ the NH and then has a free-standing for later could be a good choice of hospice.
Good luck, none of this is simple or easy.
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With my FIL he was asking every time we visited him even though most of his mind was gone. We would say you too ill to be at home so you are here until you get better (which we knew would never happen) It is hard to know that they will be in a nursing home when all they want to do is go home but if you are able to provide the proper care then you really are doing a disservice to your mom. Yes it pulls at the heart strings and you feel awful as they beg you to come home but in the end you have to accept you made the right decision and have your moms best interest to get the best care possible for her.

Be careful too on the nursing home the hospital chooses in that short time. It has been my experience they aren't the best choice out there. the one chosen by the hospital was cheaper then where we ended up putting him and didn't always meet the bare minimum requirements. Within a month we could see it was a crap hole and moved him to a better quality facility. So check out the place they put you and be prepared to do some looking for a future transfer date to a better care facility. You may luck out and get a great one but I have found if they have a bed available that quickly and no wait list a little red flag should go up.
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