I’d like to bring mom home from nursing home.

This post is from Feb 2024. The OP has not responded since Feb 18. Also has only this one post.

I was a liaison for 5 years with Home Health & Hospice. There are so many factors. #1 is that your Mom is already in the Nursing Home, and seems like she has been for over a year. It means that she is "custodial" care level at nursing home. I don't know how that is being paid, but it's wonderful if it is being covered by Soc Sec/MediCare/&MediCaid combined. That is a gift, if that's the case.
If she is discharged and brought into a home environment for a period of time. ----- When the time comes for placement again, things could be different. A hospital stay of 3 overnights might be required, among other things.
In California, there are Board and Cares sometimes referred to as RCFE. Residential Care Facilities for the Elderly. The cost is about $3500 per month. There are only 5 or 6 patients, it is a regular house in a neighborhood. I'm not sure about the hoyer lift, though. My sister has different medical issues, but we have been pleased with her being a patient at a Board n Care for the past 15 months.
I guess what I'm saying, there is a lot to consider when you take a look long term. The Case Manager at the Nursing Home, or the Social Worker, or my 1st choice would be to meet with the Medical Director of the nursing home and get a medical opinion about discharging to home.

I moved my mother from one facility to another. She initially was on a wait list. I desperately wanted her in this other facility. I always spoke to the director with great respect regarding their facility. I was not given an exact timeline. I kept in touch but made sure I was not becoming a nag. I was asked after a certain period of time if I would be alright if she was initially moved to a room on the rehab wing until a room opened up in the long term section. I said certainly. She was on the wait list for a few months and as soon as there was an opening I sprang into action to move her.

No one can possibly tell you how long a wait might be but you might get a vibe from the director. Alot depends upon the area you are in,cost of the facility,number of people in the area who are able to meet that cost. You won't want to likely hear this but I will say that 26 hours per week is not alot of help although perhaps you will manage well. We don't know you. When people here wish you well they truly mean it as most have suffered greatly dealing with aging parents.

You ask about social security payments yet don't mention where her payments are presently going. It might be easier if we knew that. My late mother's went into her bank account but completely went to Medicare. There are different scenarios such as what I mentioned or whether her payments are presently going to the facility she is in to pay for her care.

I will say that it may not be a good sign if she has been on a list for a long time with no opening. Perhaps you could ask your contact person at your chosen facility if they could level with you a bit more regarding that. It would also help if you provide information regarding where her social security payments are presently going.

My Rude Aunt was considered a goner by her doctors seven years ago. She is now 101. Just sayin', be prepared for the caregiving journey to be much longer than you ever expected. (Fortunately, since Rude Aunt is so rude, I am not her caregiver.)

Ruthman, you asked questions about your own personal locations and financial details, to complete strangers who don’t have that information. You could have realised that strangers couldn’t provide answers to your personal factual situation. In fact the right authorities to ask might well have been obvious, if you thought about it.

You have been offensive to people who made other suggestions, based on their own experience. I hope that you do better with in-home care than so many other people, and wonder whether you, your mother and your husband will all enjoy the learning experience. I won’t wish you luck, because that’s another thing that makes you cross.

Somehow I must have known something. I didn't answer this question, and all can attest, it is rare that I don't make some response to a question.

I think that no one on this Forum was rude to you, ruthman, and I think few members of the Forum are bitter. You don't know us well. Give us a bit of time before you label us.

I hesitated to answer this simply because my answer would have reflected my own choices, what I have seen through a long career as an RN and as a family member, and because it seemed to me that you truly were thinking this all out already. That you understood at the start that, indeed, this may not work. It may not even bring happiness.

Here's the thing. I worked my entire career as an RN and I loved it.
As you may guess, unless we choose labor/delivery or peds, most of us deal, as RNs with the elderly. Most other patients are out before we can care for them. As much as I loved my career I did learn early on how much of an absolute WIPE OUT it is to care for the elderly. I knew I could never for a single moment take on 24/7 care for an elder of mine no matter how much love I had. I had 12 ill days, 12 holidays and five weeks vacation. I worked three 12 hour shifts a week. And I KNEW my limitations very well.

Speaking of love? When your loved ones come into your home they very quickly move from being Mom or Dad to being the one cared for, the one who is needy, the one who is losing everything. And the daughter? She isn't that anymore. She is the caregiver. The decider.
Yes, it can make you bitter. And it can destroy relationships.
But more than that, it can make you mentally and/or physically ill and it can KILL you. We have seen that.

I take you as an adult, perfectly capable of making your own decision in this matter.
But this I would beg you. Be honest with your Mother from the beginning. Tell her your feelings that 24/7 care in your home may not work for you, for your hubby or for her, and if ONE is unhappy, then the situation needs to change, and she needs to move into a situation where she is cared for by caregivers, and you can visit, and return to being a daughter only, not the "decider." Not the "caregiver".

I trust you to make what you feel is the best decision for yourself and for your husband and for your mother. I trust you to change things if this doesn't work.

I find that children of the elderly come to feel responsible for their happiness. Let me ask you, ruthman? Is life at any age about happiness?
At what point in all her life did your mother not have moments of unhappiness and uncertainty? That is life. A child isn't responsible for the parent's happiness, cannot be made so, cannot take that on.
So don't ask happiness of all this. That's magical thinking. There is no "happiness" in aging to speak of. It's about loss. It's about preparing to let go of life. Contentment? Perhaps. But there will be pain, loss and anquish aplenty, enough to turn the sweetest tea to cold and bitter.

I wish you luck.
And the fact is that is how I end almost EVERY SINGLE response I write on AC. Because, guess what? I truly do wish the OPs luck.
I don't much worry myself about being considered "nice". In fact I think we often do much more good by shaking things up, getting people to think outside the boxes they have themselves so neatly packed away into. I feel they are adults who come with questions. We will answer. They are free to take or leave our advice wholly or piecemeal.
I hope you will update us. Both on your decision and how it all goes for you. That's what the Forum is all about. You, if you take all this on? You will be an expert pretty quick. Because it's a steep learning curve.

I am very happy with all I learned helping my brother at the end of his life, being his Trustee and his POA. I ended proud of him, proud of myself. But, wow. It was one terrifying ride, no matter how much I learned.

Regarding social security income, those questions may be best directed to an Accountant or Elder Law Attorney to see if/how it will impact a future Aged Care placement.

Regarding a waiting period for an Aged Care placement - I would be touring your local ones, identify a shortlist & ask them directly.

Finding out how a facility works, how quickly (or not) any admission process is, if private pay is required initially may indeed give you what you need for good long term plans.

Your Home (Plan A) then as smooth as possible transition into Care (Plan B) if/as you need it.

Crises planning is always possible (Plan C) but if you can avoid, do so.

Ok I suggest you do not take her home. My husband suffered a massive stroke 11 years ago, he was in a nursing home for 3 years because after the stroke I was in shock and grief and did not know what to do. I took him out of the nursing home after 3 years and brought him home, I thought he would live maybe another 3 years and would be better off at home well it is now 11 years and I have no life, no job, I had a 6 figure salary job now I clean shit at 3 am. Some days, like today I want him to die or I want me to die because I feel I can't take it 1 more day. This is not for the faint at heart, I am a strong woman but this is hell, I think a concentration camp would be easier, at least not 11 years worth of hell. You think you can do this but love is not enough, this job is physical, emotional it zapz the life from you...keep her put, visit daily, become friends with the staff at the nursing home, take her out when you can for a ride in the car, to her favorite park, diner, etc...but you go home and get some sleep. Good luck.

ruthman1,

I have been on this forum long enough to know that the vast majority of people on this forum are trying to be helpful.

When a person posts a question on a public forum they will receive a variety of responses. Please don’t take all of the comments personally.

You have the right to agree or disagree with the opinions that are voiced. Just like members of a forum have the right to express their opinions.

Some people are direct, others are going to be more reserved when answering questions. Neither is a ‘right or wrong’ approach when responding to a question.

Sometimes, people make incorrect assumptions. No one is a mind reader and sometimes the particular circumstances aren’t explained clearly enough.

We all have our own personalities, our own personal reasons and circumstances for feeling as we do. I feel it’s important to look at differing views so that we can learn from each other.

Of course, it’s important to be respectful of one another even when we disagree.

Occasionally, people will make an inappropriate comment. Don’t allow those statements to distract you from gaining insight from the forum as a whole.

Most of us who are posting have asked questions ourselves. I can say that I am grateful for the help that I received when I was a caregiver for my mom.

There may be answers that won’t be useful in your situation. Just disregard those.

Please don’t fault anyone for trying to prevent possible problems that could arise from bringing your mom into your home.

Caregiving is full of challenging situations. Wishing you and your family well.

I didn't read here sarcastic good lucks. I read here warnings from experiences. And people wishing you the best.

"My fear (and my husbands fear) is we bring her home and she’s either unhappy here, too, or the added responsibility is just too much for us."

You express this fear and get comments supporting that fear, from folks who have "been there, done that", and comments from the "facilty bashers" who urge you to take mom home and leave your blood on the floor in the process.

So you accuse us of being "bitter old ladies" leaving comments wishing you good luck that are "outright rude". As if we've got nothing better to do than spend our time sharing our experiences with you on this forum, and as if we're paid by Agingcare to recommend managed care! Laughable, really. You're looking a gift horse in the mouth, is what you're doing, my friend.

Some people read between the lines and see ulterior motives buried in the Truth. They have to learn things the Hard Way, not through advice given by exhausted, burned out caregivers who have gone before you who are trying to SPARE you what they've suffered themselves. Wishing you "good luck" is a prayer for success, nothing more and nothing less.

If you fail at this endeavor, you'll come back and say you now understand what we were trying to tell you.

If you succeed at this endeavor, you'll come back and tell the managed care bashers they were SO right and home care rocks and you've never been happier. That turning your house into a nursing home was The Right Decsision.

There's only ONE way to find out, and that's to do it.

How ever this situation works out, best of luck to you.

It really depends. I had two experiences. 1. My mother, many years ago, came home from rehab. She had live-in caregivers at home, so it wasn't all on me. And she was pleasant to live with. The care was expensive, but she needed it.
2. After she passed, I started helping my dad. After a while, I couldn't do it anymore and he went to a board and care. After some months, I decided to take him home. He had a caregiver, but I was still doing a lot for him. Plus, he was a very difficult person, screaming and wanting different things to clutter up the place. I decided to place him again.

OP, my own experience was moving into my mother’s flat and taking her home from hospital, providing round the clock care on my own until she died from cancer. I have no regrets at all, I'm certainly not bitter, but I could not have done it for longer than the month it took.

You have asked for advice. I have read the entire thread, and no comments sound rude. I have not read anyone suggesting that you don’t “have your mom’s best interests at heart”. Sure, some respondents are ‘bitter’, and the reasons for that are part of their advice. Using ‘old ladies’ as you did sounds genuinely rude, and I hope that’s not your attitude to your mother. You don’t have to take any notice of any comments that you don’t like.

If you go ahead and your experience is very different from most other peoples, I hope you come back and tell us your secrets for success.

Also, don’t forget the strict and proficient records you need to keep with receipts, etc. You are going to have to learn all the laws unless mom has a cushy savings.

Many people here who thought it would be no problem to have Mom live with them found out it wasn’t sustainable .

You are already concerned that it will be too much . I would take that as a must listen to message from my gut and not bring her home .
But that’s me.

I wish you luck .

Thanks Fawnby for detailing your experience. This reminds me of what many people told me when considering home care (people I know, plus on this Forum I think). which is , for home care to go well, it takes a village to manage home care.

So for the OP, I would say this would be a big factor to consider. Will you have multiple other people to help in the process in various ways ? (whether family, friends, paid caregivers)? This may be a key factor and decision point

My credentials: I cared for both my parents at their home, one after the other. This was five years of my life. I employed caregivers to help - a live-in, two or three others, and I was there when needed. It took all of us to take care of them. I have cared for another LO who had a stroke. Post -stroke care, hands on, two years in the home. No outside help. Also a friend, who lived at my house, and she required six months' care for serious kidney disease. I am not a medical professional, so I started out where you are now. I presently care for my dear husband, who has dementia.

Before you move mom into your home, you need to learn how to take care of her. She will require a lot more than you expect, and it will be a life-changing experience for you. Chances are you won't be the same person after the psychological challenges that accompany caregiving.

In your home, check the doors mom will need to use. I had to remove entirely the 28" doors in the home (by myself, and they were heavy wood). Her wheelchair needs to be able to pass through your doors. Is there a ledge or sill under the door? If so, you will be lifting the chair up and over the ledges for her. It's hard on the helper's back. Her wheelchair may have to pivot from the hall to go through the door. Is there enough room? Is the toilet the right height for transfer from her wheelchair? Can she do that on her own? Are you able to install a special toilet seat that is the right height and with handles to help her transfer? I had to do this myself, and it wasn't too difficult. How about the counter height in the bathroom? Can she reach the faucet from her wheelchair? Fill a glass? Put toothpaste on her brush and use it? Can she spit into the basin? Wash her face? Do you know what a shower transfer chair is? Can you order and put it together and install it in the shower or tub? Is there a handheld shower head where she'll be bathed? It's absolutely necessary, so if not, order from Amazon and install it yourself - it's not hard to do. Learn how to transfer her from wheelchair to shower transfer chair to tub, before you actually have to do it. You'll need training for the Hoyer lift, and don't let them tell you that using it is a one-person job. It can be, but unless you've had experience, you should have help, at least at first. Get a hospital bed table, it fits over the bed and she can eat and be groomed there, and it's easily wheeled into a corner if not needed. Get a baby monitor so you can listen to her in her room 24/7. It may disturb your sleep, but this is part of having mom at home. Get training in moving mom from wheelchair to car and back again. The training focuses on what you must do when a patient has little or no use of one side of her body, but they don't really tell you how to protect yourself as you perform the task. Ask about that. Be aware that they will probably try to insist that you use a 45 lb. wheelchair. They will show you how to fold it, but they probably won't show you how to put it in the trunk in a way that protects you - ask about that. Be aware that wheelchairs come in different weights; get a 25 lb. "companion chair" for car trips. There's a lot more, too, but you can handle things as they come up.

Please understand that elders whose health is failing are usually unhappy. They express that in different ways. They protect themselves psychologically by thinking that if they could just get out of where they are now, they'd be happy. Move them, and they are still unhappy.

In the case of stroke, there are often post-stroke problems for months and years afterward, such as painful contracture of muscles. Be prepared for that and for the treatments that may be suggested. Mom's cognition may decline. She may become angry and uncooperative. For help, consider joining a stroke support group. You and mom can attend meetings and activities together.

I wish you the best of luck.

Agingcare.com does have listings of AL facilities. It also has listings of home care agencies too. So we can see the websites revenue sources. I dont know how much revenue comes from each type. But thats ok to me, I trust that the majority of answers here are honest , from people going through caregiving scenarios, like myself.

As for doing home care - it can be done in some situations. Many posters on here have done it as can be read about. Keep in mind there are 2 broad scenarios of home care, each with various pluses and minuses :
1) bring the elderly LO into your house
2) having the elderly LO stay in their house with caregiving occurring there (whether thats family members and/or paid caregivers).

We all must consider our individual LO's scenarios. I made my parents decisions, after much thought about their individual situations, discussion with family members and friends, and research, including this forum.

The right Nursing home can make al the difference In the World . I Grabbed my brother Out of a terrible One and took him home for 6 Months till he ended up in the ICU and then he went to a Good Nursing home the Last few Months of his Life where he was happy and had friends . My Mother On the other hand really declined at One rehab where she was for 80 days . I could Not reason with her as I asked her to come to My House . She got sicker ended up back in the Hospital - I Found her a good Place and she died a few months Later . My Dad had a stroke and I chose to do indoor rehab at Home where he recovered . A lot of work But These are your Family members - You dont get them Back after they pass so Enjoy the time you do have with them . Sure I got exhausted and felt Like the parent but I was their Family . So Go with what will make you and your Parent happy .

Look, there will always be people who push caregiving at home on this forum.

No one here has the right to tell you what to do. It’s your choice and we support you no matter what you choose to do.

We are only informing you of all the possibilities of this type of arrangement.

Take it from me and many others who have been a caregiver for extended periods of time and are speaking from firsthand experiences.

Caregiving at home is possible until it is no longer feasible for the patient and the provider.

I was told by my mother’s doctors that I provided excellent care for her but I paid a big price for it. Are you willing to sacrifice everything, because that’s where it will end up?

People will only get worse as time goes by. They will never improve. You can’t turn back time.

It’s an act of love and responsibility for caregivers to let go and allow others to care for their family members.

I would not place myself or my family member in this situation again. I was a bit naive and pushed myself. Mom told me herself when she was placed in her ‘end of life’ hospice care home that she was sorry that I sacrificed so much of my life for her.

Placing them allows them not to feel like they are a burden on their family members.

Mom was relieved to know that she was being cared for around the clock and that her children could visit as her children instead of being her caregivers. Oh, she thanked me a million times for caring for her but she felt uncomfortable being a burden on me.

Some of you all sound like bitter old ladies. For real. I’m here asking for advice and some of these responses are just plain outright rude.

For those that had meaningful, helpful and polite responses, thank you. For those that don’t think I have my mom’s best interests at heart, you can think as you wish. 🫡

I am not as shill for A Place For Mom, I can assure you. I cared for my 95 yo parents in their home with my sister until we were no longer physically and emotionally able to do it any longer. We eventually placed our parents because it was the best thing for them and for their daughters. We did hope that they could die in their home but it was not possible. They both needed too much care.

This site is my lifeline. It helps me get through what had been the most miserable challenging time in my life. I am grateful for the support I receive here. No one else in my life gets how soul sucking this situation is.

I travel from California to NYC every other month for one month stretches of time to ease my sister’s load. Either my sister or I visit our parents every single day at the NH. They are not abandoned by any stretch of the imagination. We simply could no longer do the work involved and knew enough when to stop.

Beware of people who broadly nix caring for someone at home. Keep in mind this website is owned by "A Place for Mom" which is owned by private equity -- people who make money from facilities.

Of course, providing care is demanding, but each person/family/etc. needs to weight the pros and cons. There is more and more technology that can help lower the burden, but there will always be "work."

Care at home by loving people is personalized and managed by loved ones. Care in most facilities is impersonal and managed by profiteers. That is not to disparage the people who actually provide care - but they have a lot to do, and limited time. Care is checklist/task based. But owners and managers will typically be looking more at costs than what is truly adequate care of a human.

Please don’t be naive.

My mother had Parkinson’s disease. I had no idea how this disease would progress. Please educate yourself on all of her health needs now and what she will require later on.

In other words, know ahead of time what you are going to be facing, before making any major decisions.

Needs will change in the person that you are caring for. The challenge of being an at home caregiver will become greater.

Also realize that your life changes too. With caregiving, you will find that your stress levels will increase.

When there is stress overload, a caregiver will experience health issues of their own. Not to mention, the anxiety of dealing with everything on your own.

Too often, we see caregivers placing their own needs on the back burner. I did this and trust me, sooner or later it will catch up with you.

I would think Mom is all for this? I would go into this as a trial period. Or an option to get her out of that NH until a better one is available. A temporary thing. What I don't like is that Mom was not getting any therapy. For no other reason than to keep her strength up. Learn how to get around in a wheelchair. Be able to sit up in a regular chair. I would get her doctor to order PT in ur home. They can evaluate her and see if there is room for improvement. There may not be because she has been allowed to stay in bed. Maybe thats Moms choice.

To answer some of your questions; no, there would be no waiting time to have to keep her at home. If she needed to be re-admitted to a nursing home you would want to take her to the ER and go that route. That would hopefully get you a bed in a better facility.

You say you will work when her aides are caring for her, do you work from home? If not, you may find yourself unemployed. Aides do not always show up and even before younger people quit working in this field, it was not always possible to have a replacement sent, so you would be it to fill the hours. Meaning last minute call in to your employer.

If she is going to pay you to live in your home, and she should, do it as share of costs, not rent. She pays 1/4 of ALL the household expenses, including increased homeowners insurance to insure that you guys do not have problems if an aid gets injured in your home. If your utilities double or whatever, she pays extra for that increase. It should not cost your family to do this and her building a savings account all the while. KEEP meticulous records. You can write what her share is right on the bills and the check # it was paid by, get a system down that easily accounts for how her SS check was used. Medicaid will require a new application and that means a new look back, in the event this doesn't work out. You do not want to scramble trying to figure it out during a crisis placement, God forbid.

She buys ALL of her stuff, depends, chucks, clothing, meds; prescription and over the counter, special treats, etc.

I pray for all of you that this works out and you all find joy, peace and happiness. I, also, pray that if it doesn't work out, you guys can see it before everyone is traumatized and burnt to a crisp.

May The Lord touch this situation and all of you.

I don't think you can properly care for your mother at home. She will not be getting better. She will get worse and her needs will increase dramatically. What you can handle today will become untenable in the future. 25 hours of agency caregiving is not nearly enough. She needs 24/7.

She might not like being in a nursing home but it is the best place for her. Not liking being there is not a good enough reason for her to leave. She is receiving better care there by people who are trained. No matter what you think, you can't provide this level of care at home with limited resources.

The fact she does not have bed sores speaks volumes about the level of care she is receiving at her facility. She is receiving decent care. She is better off there.

I am sorry she is lingering in such a diminished state and still has capacity. This is a very sad situation for both her and for you helplessly watching it.

One of the things you would have to be very watchful for are Pressure Sores.
In theory she should be repositioned every 2 hours.
And oddly enough that is about how often you should be checking her briefs (aka "diapers") so that she does not remain in soiled clothing. (that can cause skin breakdown as well)

Also keep in mind that while in the facility she probably has 2 aides that will care for her and at home there will most likely be just 1. Is there a need for 2 caregivers? Often if you get a caregiver from an agency if they require equipment for transfer the agency will want 2 caregivers for the safety of the caregiver as well as the safety of the patient/client. If this is the case your 25 to 26 hours a week has just been cut to 12 or 13 hours.

It may sound like I am discouraging you from doing this. I guess in a way I am.
Caregiving 24/7/365 is not easy. In most cases it is not fun. It is exhausting mentally, physically and emotionally. It is stressful on ALL your relationships. You will be giving up "date nights", outings with friends, the option to just go to a movie or anywhere unless you arrange a caregiver. (You can not leave mom alone, if she is unable to get out of the house in an emergency or call 911 if she needed help)

If you bring her home and she's unhappy, you face those same waiting lists to get her in ANYWHERE.

Are you, and your husband willing to give up your privacy? That's the biggest issue for me.

Strokes have this tendency to cause hidden damage, like vascular dementia. Dementia of any sort is a real game changer when it comes to trying to do caregiving at home.

You say you will still be able to work? How is mom going to get seen by her doctors, psychiatrist, audiologist, podiatrist, hairdresser? All of those in house services now need to be scheduled and mom transported. And toileting attended to while out.

I want to go home.
I want to go home.
I want to go home.
My Mother got home.
I can't walk.
I can't walk.
I can't walk..
She learnt to walk again.
I want the stroke to go away.
😪