Mom being transferred to long-term from rehab floor. Very upsetting!

Xinabess
You have a rough road with work young daughters and a mom who needs full time care

Your mom's rehab facility sounds upscale if she had a private room - my mom's first foray into rehab 9 years ago while she was in renal failure and we didn't know it landed her in a room with three beds - she was not demented but out of her mind from dehydration and pain pills - they ended up tying her down wth a broken back and broken shoulder - this was a horribly long weekend waiting for her primary to see her on Monday when she was sent to the ER and spent a week in the hospital only to return to the same rehab for another 6 weeks interrupted by another trip to the ER and hospitalization for a UTI so bad it required 3iv antibiotics

Last October after another bad fall she was sent to this same rehab which had changed owners and was so much worst than before that her doctor wouldn't visit her there leaving us to the mercy of the house doctor

Luckily my mom only had to spend 6 weeks there which were hard on everyone now that she has dementia and if Medicare hadn't paid for the time it would have cost $20,0000

So if you think mom will be a long time resident in a nursing home then start making plans to get her on Medicaid and find the best place you can for her - I too am torn with having my mom close enough for me to visit during the work week vs the having her in a place that is safe - with dementia she will never be happy anywhere now but I know coming home is not an option and I fight the urge to just pack her up and bring home every time I visit her

oops! Lucy is my 15 yo. Olivia is a junior in college, abroad in Copenhagen for the semester. I forgot to clarify that!

$12,000 per month?? Holy Mary. So does this place accept Medicaid patients as well? I'm completely confused as to how it all works. Are there upscale nursing homes? I know there are assisted living places (with "ongoing" care, i.e. nursing floors) that cost a bundle, but I thought SNFs were mostly covered by Medicaid.

My update: I visited my mom after work. She is back to being rather benign and sweet, after her initial freak-out, though she is still gunning to go home. I am looking into options on that front. I want her to be home at this point if we can make it work, what with her two-person bed-to-wheelchair transferring issues.

The rehab unit was a palace compared to the new unit. Rehab is new, clean, and bustling with OTs, PTs, nurses, a doctor, aides, etc. The longterm unit is rundown, with harsh florescent lights everywhere (the worst!) and only a couple of aides around. My mom did get the window, thank god, and her roommate, Loretta, is very nice and friendly and has her marbles. My mom was polite and friendly back, but she is not the super chatty and social type, so she kept mouthing to me that she wants a private room and asked for the dividing curtain to be drawn (to Loretta's dismay, I suspect). My mom is mostly an introvert who enjoys being alone much of the time. Loretta is way into bingo; Doreen, my mom, is not, to say the least. There is only one private room on the floor, unfortunately. The (sort of) good news is that in this unit you can "decorate," so I will bring a nice bedspread, lamp, etc. to try to make somewhat less bleak.

She is actually right down the hall from her former room, so I saw the aides who have come to love her (and vice versa), and they are going to visit her. They thought she went home and were upset. After all, those ladies washed her, changed her (ugh), and got to know her. After 3 months, they became attached. It's an intimate relationship, when you think about it. I wish the SNF/SW has been more sensitive and hadn't ripped my mom out of the rehab unit with no notice. Don't they know how traumatic that is?

On it goes. Lucy starts school tomorrow. She is planning her outfit and is psyched about her new backpack. Olivia seems to be having a blast in Copenhagen and is off to Norway for the weekend. So, much to be happy about in the midst of the sadness. Life at all its stages. Sigh.

Xina, this is upsetting, i know. I'm only going to address one part of your qustion--about what folks who can private pay do.

My mom pays 12000 per month to live in a nh in CT, near where my brother lives. She6been there as a private pay patient for two years ( do the math). My mom has vascular dementia, but without behavioral issues, besides anxiety. She is in a shared room ( was in a private room for rehab; we moved her into a double when her Medicare eligibility ended, because we need to make her money last, and because if she lives another couple years, she'll need to be in a shared space. Better nowcwhen she can get used to it).

Her original roommate was an amputee with very little speech. But roomate buzzed if mom was in trouble, and i saw this enormously obese woman, who i thought didn't have much going on upstairs pat my mom's bed lovingly when mom came back from a hospitalization.

Current roomate is not as nice, but bearable. Mom doesn't want a window, but likes to face the hallway, to see and hear what's going on. Yes, there are demented patients on her floor ( more dementia than mom has, i guess i mean).

I'm not sure what I'm trying to say, Xina, except that it's a place where mom gets good care. It's where she needs to be.

You are upset, which is perfectly understandable, but big decisions like bringing mom home are handled better with a cooler head. Your mom is calling every five minutes because you are answering the phone. Rest assured that if you let it go to voicemail and it really is an emergency she will leave you a message. Your mom was in rehab a long time. You both were caught by surprise that her days on that service were coming to an end. Do what you can to help her transition. I bet the nurses will love having her on the floor.

I'd try to stay cool while your mom gets settled in. Hopefully, she won't continue to call you every few minutes. If so, I'd have to look into it. Does she recall doing that?

It isn't fair, Xinabess. I know that doesn't help, but I just wanted to agree - not fair.

Don't be scared to go and see her, but don't go empty-handed - take something for her to drink, something for her to eat and something for her to do, even if it's only a magazine (she's got enough mobility to manage a magazine, do I remember right?). And keep it short - tell her she needs her rest after the upheaval, and besides things always look better in the morning. And of course you don't need to tell her, but you need your rest too!

I always thought my mother would be more bothered by people with more advanced dementia than she actually was. She wasn't what you'd call a people-person at the best of times, but for someone as critical as she tended to be (especially once she started losing inhibitions) she seemed not to remark on dementia behaviours. There but for the Grace of God, I suppose?

Hugs to you. And things really do look better in the morning.

Also, I am furious that they gave us no warning that this would happen today. They just whisked her out of her private room on the floor she's been on for three dos, where she has bonded with the staff and gotten used to the routine, and plopped her in a shared room on a whole new floor. Sorry to go on, but I don't know what to do. I'm scared to visit her later because I know she will talk about nothing else other than going home asap. She perseverates on that topic.

Thanks. Right now she is BEGGING me to get her out of there, and calling me every five minutes even though I keep telling her that I am at WORK. She feels like she's in a madhouse in her new room. She is a loner, so she really prefers a single room. I've seen those floors and they are filled with very sick people--amputees, dementia patients, etc. What do rich people do, other than hire home care? Are there nursing homes that are actually pleasant? I HATE that she is mixed in with people who are demented when she is not.

I used to think that having a private room was best too, but, after seeing things up close, it turns out that having a roommate was a godsend. My cousin liked hers a lot. They were company to each other and it really made a difference. I welcome the roommate now. Of course, she had one that didn't work out, but other than, it's been quite positive. They try to match personalities so each roommate is happy.

I would set my mind to have a positive attitude. Your negative energy about it can rub off on her, so, I'd be cheerful and upbeat, no matter how I felt. Look for good things to say and maybe, it will be a positive thing. You can make her room cheerful with bright and friendly decor.

I'd caution you about getting her hopes up that you can bring her home, because if her needs are too great and you can't do it, then she will be hoping for something that isn't possible and that might may her feel bad, like it's her fault.

xinabess, I think a roommate is a good idea. Patients in a single room can get very depressed with no one to talk to or complain about. Roommates tend to look out for one another too. Take one step at a time.

Sasha brought up a good point about bringing in food, and to check with the Staff first. Where my Mom was in long-term-care, they would measure how much food she ate for all her meals and if she drink any Boost during the day.

At the beginning when my Mom was first there, Dad would visit her during lunch and he would finish up her lunch tray.... oops, that was before we knew that the Staff was measuring Mom's intake. They had thought she ate pretty hardy.

xinabess, I have been right where you are. Here is what I learned:

Always make sure I check my emotions at the car, before a visit.

Visit with fun activities in mind. Pictures, scrapbooks, brochures of places where she has travel or things she has enjoyed.

Take something to eat she really likes. Check with staff and make sure it is OK.

Make a friend of one or two members of the staff. It always help to have some one on your side.

Ask for a Care Conference for you to attend. This is great for questions and concerns like yours to not only be answered but also communication is all above.

Always approach your mother with a positive light mood. She will sense the mood and it will make her day easier.

Above all, do not let this move become your focus for all her care. Rather enjoy the time you have left with her and remember you are not the bad person her.

Take a break for yourself whether a cup of coffee or a moment of solitude you deserve this.

I just dread seeing this new room/floor. The rehab unit at least has an atmosphere of hope, as you say, daughter of1930. The longterm places feel like warehouses where they keep people until they die. I am now more motivated to get my mom home if possible. She sounds so vulnerable and sad. It's awful that she can't make any decisions for herself at this point and that I am in the position of calling the shots.

I remember what a hard pill this was to swallow when it happened with my mom. She wasn't making progress in rehab despite all efforts from both therapists and her own tries, she was dismissed from therapy and placed in long term nursing care. It's like a huge admission of defeat. My mom had a roommate but she was bedbound and didn't talk, so there was little issue with her. Sadly, she had few visitors. I'd suggest that you talk to SW about getting placed in at least a bed by the window as soon as possible and then set about making the room as home like as possible. Surround her with pictures and familiar things. We did all we could to make a rotten time in my mom's life better by having her things, her favorite clothes, having her hair done, and making sure she got out and about as much as possible. I won't say it was great or easy, just making the best of the crappy hand she was dealt. Good luck and blessings

Xina, my Mom went through the very same thing. My Mom wasn't progressing at all in rehab so after 21 days it was decided she needed to be placed in long-term-care.

In Rehab she shared a room and I was glad because my Mom didn't like being alone. Even though she couldn't communicate with her room-mate [too bad she couldn't as her room-mate was delightful and had a good sense of humor] her room-mate did watch out for her, and would buzz the nurse/aides any time my Mom would try to climb out of bed or out of her geri-reclinder. My Mom was such an escape artist that most of the time she spend at the nursing station so they could watch her as she was a high fall risk.

My Mom had late stage dementia due to a serious head injury so she really didn't know where she was. Xina, from your profile it sounds like your Mom is clear minded so this would be more difficult for her to accept.

My Mom transferred to long-term-care, this time she got a window but she never looked out, but it was nice having the late afternoon sun coming in. Mom also had a room-mate who kept and eye on her as this room-mate was clear minded but bed ridden. Mom kept trying to climb out again and the room-mate was quick with the buzzer.