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!
The VERY first thing I was told when I started the process - it is no longer called a nursing home. When our parents hear that - they automatically get this picture of people left in filthy places with dirty diapers and bed sores just waiting to die, and if it is a good place - it is not like that any more.
Instead of Nursing Home, tell her after the rehab she will be moving on to a Skilled Nursing Facility (the "pro's" call it a SNiF for short) - sounds much better than a nursing home, right? or even Long Term Care
I am not sure how much I agree with letting HER see the place first - mainly because I know if I had taken mother on a tour she would have found 100 things that were wrong and it would have been twice as hard to do. Go look without her. She isn't going to like ANYWHERE.
The head of the place mother is in asked me how she felt about it - Oh she is thrilled with giving up her independence and room and is so happy to be going to a place where she has to wait on someone to bring her something to drink and eat, etc. DUH. No one is HAPPY about these things. But it is a fact of life...
My advice - ask anyone and everyone you meet, know..any nurse, EMT, anyone with older parents..not where they WOULD put there parents - there are LONG lists of those - ask where they would NOT ...I found three constants in my area to avoid.. I also found the same 4 always recommended...We have a neighborhood Facebook page and I met some home health care workers, senior advocates, the manager of another SNiF who have always been there to give me advice when I need it.
I go to see mom at LEAST every 3 days, and my niece once a week. We try to vary the times so we see the different procedures throughout the day. meet the nurses and staff. I have met most of the staff - even on different wards. and they also know - even after only 2 months - that I speak my mind and if I do not like the way you are doing something for my mother - I am going to let you (and half the home) know it.
I have been advised, though, that I can not take on the other patients treatments as my own crusade, which is difficult. With my mom still mostly coherent, as your mother is, she doesn't need as much help, but I watch them just bring in her room mates food tray and put it in front of her, see her fall alseep in front of it and not eat a bite before they take it way and I get annoyed. She has alz. and has been there 5 years. Her family is in MAYBE once a month...so, while I think her treatment could be better, because she can't complain any longer (for the most part, sadly, she is just a breathing shell)...someone should be there to take up for her, I have to focus on the care mother receives - and if/when I see the family, I talk to them.
My point there - make sure you visit often - so she knows you won't allow her to become that way... but not every day - it will become too much - I am finding every other day too much and am having to cut back - and you have a job, which will make it even more difficult. You have to take care of YOU.
And I knw it is hard. This has been the most difficult thing I have ever had to do. Mother lived with us a total of 9 years - and it almost destroyed my marriage.
Good luck, God Bless you.
My mother has ALz, she is in memory care...has been for just over a year now. She still asks to go home and IMHO (in my honest opinion), she will continue to do so as long as she has a memory of her home. I tell my mom that the dr is filling out the paperwork for her to go home and as soon as that is done, she can go. Of course, she forgets all this when I visit again 2 days later..but it works. I suggest that you keep telling her as soon as she is the pneumonia is cleared up, she can go home. It is best not to say "you will never get to live at home again." If your mother has medicare, she can have hospice in her home, but...you will still be hands on with her care. It is best that you do what you have to do so that mom is taken care of and you are not so stressed with her care now.
Keep your visits shorts so that the subject of going home does not continue on to the point that she becomes agitated and overly upset. You could also call her on the phone instead of going in to see her everyday...but again...keep it short. Hugs to you...I am sure you will get other responses to your post, so hang in there.
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.
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.
I don't enjoy being "economical with the truth" either, so I understand how uncomfortable you feel soft-soaping her on this subject. But if it helps, we maintained (with my great aunt's collusion) the polite fiction that she was in temporary care for around three years, with no need for loss of dignity or admission of defeat. It cost her a packet, because the care home fees were higher and her flat had to be maintained, but it maintained her mental status quo and made her happy.
At the moment, you can truthfully tell your mother that she is much too ill to go home. When she asks what happens next, I should try to get her to concentrate on saving her strength for now and to cross future bridges when she gets to them. Reassure her that you will make sure she gets the very best help and care whatever happens, but it's much too early to make plans just yet. And, sadly, this is all true. In your place I'd be listening carefully to her doctors and taking one day at a time. Has anyone estimated when they're hoping she'll be able to move to rehab?
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.
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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