Heavy heart, wanting to move mother out of nursing home and back to her own home. How/Where to start?

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Heavy heart, wanting to move mother out of nursing home and back to her own home. How/Where to start?

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I would like to move my mother from a nursing home back to her own home with in-home nursing care. She is now in a nursing home for rehab after a hip fracture. Prior to her fall she was independent, living alone, cooking, bill-paying, etc. She used a walker for balance but got around pretty well. Unfortunately, since the fall she has not regained any mobility after a lot of PT and cannot stand. The PT itself has worn her out. She is now incontinent and has one bad bedsore causing much pain since she cannot move herself in bed. She takes several meds. From what I am finding out, she has not received the best of care and is not always treated with dignity in the NH. She had to go back to the hospital due to low hemoglobin. They will discharge her back to the NH but it weighs heavy on my heart and I want to bring her home. I have 2 siblings that would be able to share in taking shifts with me. We would most likely need CNA and Skilled nursing levels of care. She cannot stand, the NH was using hoists. She has other issues including diabetes, heart issues, etc. All were completely under control before the fall and still are OK. Eventually, this will probably become Hospice. She is now very weak and barely eating. We do not have the funds for long-term nursing unless/until she becomes eligible for Medicaid after all assets (not much) are spent down and they would put a lean on the house. How long would it take to move from NH back home, aligning nursing services, hospital bed, etc? Does anyone have advice on how/where to start? Experiences with this?

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Who placed her in the Nursing Home?
If the person that has Medical or Health POA has placed her there or her Husband then you probably have a Court fight on your hands.
The placement was (most likely) made in her best interest and for her safety and continued care.
In order to release her you would have to obtain Guardianship.
If she agreed to the Nursing Home, (she has no cognitive decline making her not competent) she can asked to be released as long as she has a SAFE place to go.
The Nursing Home can arrange transport if she needs medical transport otherwise she can get into a car when she is released.
You need to have all the equipment that you will need in place before, or at least the day she is discharged.
I would suggest that you contact Hospice NOW they can arrange to have the equipment in the house, they can arrange transport and they will start caring for her right away. It would be so much easier with their help to co-ordinate the move.

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Doc needs to order hospice (OP can check various places and choose preference, but needs doc order.)

Based on my recent experience, hospice will need to review her records and make assessment. My mother is now almost 4 years in MC, has little or no hearing, has been in a wheelchair for MANY months now and after a stroke early Oct, hospice came and denied. Mom is now a 2 person assist (they resorted to PT to see if they could strengthen her right side, to aid in transitioning and eating.) Their big reason? She hasn't lost weight in 6 months... Seriously? She didn't have a stroke 6 months ago!

The nurse recently demanded they come back. Mom has trouble eating and taking her meds. They managed to get weight on her and she has lost some (under normal circumstances, this would be good! she gained at least 20# the first year in MC, who knows how much over the next 3, mainly because she sits and reads.) So, she was approved and hospital bed arrived within a day or 2.

I wouldn't rule hospice out, as it can help with a bed, hoist, supplies and perhaps wound care - who knows what else... But, start with her doc, to get the ball rolling. Even if denied, I believe if doc orders the bed, hoist, etc, Medicare covers these items. They *might* cover a little (stress on little) assistance if she agrees (when mom was assessed for dementia, the nurse said Medicare covers the cost for her time and if mom agreed to have personal help, like showering, Medicare would cover the cost of the aide for that activity. We'd still have to pay for any regular aides who came.)

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I’m so sorry that your mom isn’t receiving the best care. They are probably short staffed. It’s difficult to see loved ones suffering.

I read your profile. Your mom is so young to be going through so much. My mom did rehab in her 90’s.

Has she completed her rehab stint? Have you had a meeting with the social worker and occupational and physical therapist? Have they assessed your mom’s care needs?

After my meeting with the social worker for mom, I was told that mom would benefit from staying a bit longer. I agreed and that portion was paid out of pocket.

This will be a huge responsibility to take on if you bring her home. When my mom returned home she continued with home health that her doctor ordered. Home health provides occupational therapy, physical therapy, a nurse and an aide to help with bathing.

My mom has Parkinson’s disease. Your mom has a different situation.

Is your mom reluctant to sell her home to help pay for care? Does she oppose being on Medicaid?

She needs extensive care and it may become overwhelming for you and your siblings.

Can she go into another nursing home that she would receive better care? If so, move her.

Do speak to both the director of nursing and the social worker to get her wounds treated. They are bothersome. My mom had one too.

Hospice is wonderful. Do take advantage of utilizing their services.

Wishing you and your family all the best. Take care and keep us posted. Other posters will offer feedback on your situation. Hopefully you will find useful information to help you.

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My mother is now 91. She struggled for about 1 month with PT in the NH and still cannot stand. She cannot move her body in bed. I don't think they turned her often enough and she sat in a wheelchair for many hours. The nurses do not think her mobility will improve. The PT has taken a major toll on her. She does not oppose being on Medicaid. We understand she could be eligible for Medicaid without selling the house but they would put a lean on the house then get the money (back paid) when the house is someday sold. That would allow us to go there in shifts. We would have to spend down any money over $4000 and pay out of pocket which is fine with us. This NH had great reviews from dept of health. I agree the workers are overworked and understaffed and with that sometime forget the human side. It's very difficult all around. I plan ot contact Hospice. Thank you for your response.

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Thank you for responding. I placed her in the NH after the hip surgery for physical therapy/rehab, but that has been unsuccessful. It has been about 1 month. She is my mother. My father passed away. I am seeking POA with an elderlaw attorney. She has no cognitive decline. We would stay with her 24/7 in shifts but need skilled/non-skilled nursing assistance. I agree with contacting Hospice. She is becoming very weak, we have seen a major decline since the surgery. Thank you.

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No improvement at all? Have you met with the social worker and physical therapist?

What specifically has the nursing home told you about her future care needs?

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Unless you all have LOTS of experience with full time care for an immobile elder, I would NOT be moving your mother back home! Full time in home care is ridiculously expensive, not to mention you will need a Hoyer Lift to get her up and down! Speak to a social worker at the SNF before you do ANYTHING! I shudder to think how on earth you'll handle this woman at home! You are biting off A LOT more than you're likely able to chew............so please get a lot of guidance from experienced people/care givers before doing anything rash. At least allow your mother to complete her stay in rehab before you make any decisions. Just changing dirty Depends ALONE is more than many people can handle at home.

Good luck!

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Thank you. Yes, we have a lot to think about what the reality would be.

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expect one of those siblings to bail out on the responsibilities

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That's what I was thinking! And then there is sickness, exposure to covid, etc.

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There are alot of nursing homes out there that provide good care and sadly some very bad ones. I would call the Department of Aging Onbudsman in your area. Just Google it and put your county and state in. Tell the Onbudsman your story and they will be able to recommend some good nursing homes in your area. Tell them you want one that takes Medicaid. Once u find one ( check it out for yourself too) the social worker there will be able to start the Medicaid process. Medicare will pay for 100 days of skilled nursing once a patient spends 3 days in hospital. Also, once Medicaid process starts - you are ok - they will retroactive bill your Mom once she is approved. My Mom went through this. Thank God we have a decent NH - just be prepared to be on them all the time. Also, try to get a first floor window room for your Mom so u can see her. With Covid, you need to see for yourself if she looks clean, if she looks like they r moving her around so she doesn't get sores etc. The Onbudsman will be VERY interested in your poor Mom's story and will help u advocate for her care and move her. Good luck to you. Please don't give up and think you have to move her to your home. There r places out there that take good care of their residents.

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To clarify, because this is important—Medicare does bit pay for 100 days of skilled nursing. They will pay for rehab (Post hospitalization) and only the first 20 days are covered at 100%. After that, there is a minimum $165 PER DAY co-pay that the patient is responsible for unless they have a supplement that will cover it.

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I’m sorry to hear about your mom’s struggle in a NH. You are right about NH. You are lucky if you find one that meets your expectations. My dad was in a NH, it was heart breaking of placing him when my mom can no longer take care of him. Did you have an opportunity to talk to your mom about her wishes? With all the co morbidities that you mentioned, she might end up going back to the hospital. Is this something that she wants? Some people get tired of this in and out of the hospital. If your mom wish to be comfortable, Medicare covers hospice care if qualified. Some Hospice companies own a facilities. I have not visited a hospice facility but I heard good things about it. Hospice don’t provide 24/7 care unless pt is actively dying. Are your siblings who will do the rotation to take care of your mom super committed? Remember your mom is total assist. Good luck and God bless.

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Please coordinate this with the social workers at the residential facility. They will know all the regulations and resources for your state. I would also encourage your family to consider paid home health aides in addition to your care. There will be times when all members of the family will want a day off on the same day.

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My dad's experience may have some similarities to your mother. At 90 he was living alone with long term end stage congestive heart failure, had been in the hospital repeatedly for having the fluid buildup drained, and walked precariously with a rollator. But he also was mentally fine, paid his bills, kept up with current events, friends and family. He was exhausted from the health challenges and the continual shortness of breath. When he was once again hospitalized, he spent a week not walking, due to Covid we weren’t allowed to visit and do our usual insisting he get up and walk. He was sent to rehab, something he’d done many times before. And though he tried, it was completely unsuccessful. He was exhausted both mentally and physically, walking just wasn’t coming back. Finally his doctor told us the kindest choice would be to end the therapy and let him come home on hospice. My dad decided this on his own. Hospice was a great help, but they are definitely not full time by any means. Family did the work, along with the extra help I hired. My dad was thrilled to be back in his home. He rallied initially but then declined quickly and passed away within a month. It was exactly what he wanted. I would advise you not to do this without help from hospice and without hiring additional help. I found the extra help through the hospice company, they weren’t employed by them but were CNA’s who’d worked with hospice patients for years. Hospice is great for supplies like hospital bed, diapers, Hoyer lifts, anything you need, and they give great guidance. But the hands on work of it is hard, exhausting, and the part that’s easy to underestimate. I wish you the best in figuring this out, it’s so very hard

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Does she have to return to the same nursing home she just left?
I'm wondering why The PT she received there seemed so inadequate. A good rehab program should have produced better results (unless she had deteriorating general health. Diabetes and heart problems may have played a part.). And a bedsore? That sounds like a problem with nursing care. But you will have, I think, more difficulty than you anticipate if you try to provide care in her own home.
An existing bedsore is difficult to treat. It takes scrupulous attention by care givers! And that my require more supervision than you can give or more skilled care than you can afford. And if she cannot stand, she must at least be out of bed for some periods of upright positioning and physical therapy. Will you require a lift? And can you afford home physical therapy?

Speak with her physician about her medical problems and her prognosis. Can she withstand active rehabilitation? Perhaps a social worker at the hospital can help you find a place other than the NH where she has already been, a place with a reputation for good nursing care, especially, and rehabilitation if she is a candidate for more active rehabilitation..

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My mom did well in rehab. Her roommate wasn’t improving at all. Different situations, mom with Parkinson’s disease and roommate with recovery from a broken hip.

It’s so sad watching a parent decline. Mom’s roommate ended up being a permanent resident at the home.

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Medicare will pay for equipment such as a hoyer lift, hospital bed, etc. as long as a Dr. orders it. It doesn't take long at all to set that up, home health care either. Just a few days. Getting that set up is the easy part.

Home health care provided by Medicare is extremely basic. It's physical therapy 2x a week for an hour each time. It is someone coming out 2x a week to bathe her. A nurse will come maybe one time a week just to check vitals.

I don't know what state you live in, there are various programs, different rules, regarding the state paying/sending in help. You must be prepared to do the bulk of the work yourself or pay for it with your mom's money. It is not cheap, and you have to worry
about no shows.

We brought our mom home from the nursing home needing 24/7 care, until all her assets were exhausted.

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You can move your mom out of the NH any time you want. Getting her on Medicaid to pay for her care services will mean a lien will be put on her home to recover the money they pay out. It sounds to me like she needs 24-hour care. Medicaid will not pay for that in her home. It will only pay for a nursing home. There is another way though. Advertise for two private pay live-in CNA's. Not just a companion, because your mom needs serious care and CNA's are trained for it. Medicare will pay for her to have at home nursing and physical therapy. If they send nursing, insist that it be a wound care nurse because her bedsore will need special care. Don't let them send a legion of nurses (which they will do to run up the bill and are usually useless). One CNA for during the week and one for week-ends. They can even split the week. You should have two because seven days a week is too much for any one person to do. You can insist on very strict back round checks, conduct interviews yourself, and insist on references. They will get paid out of your mother's income and this will leave Medicaid out of the picture and her home and assets can be saved.

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You may very well find that she can do more with PT/OT after she gets home and gets help there. My own mother progressively got worse in rehab, ended up in diaper, and most movement was by way of wheelchair. It took me some time, but got her up as close to prerehab mobility as I could manage - and out of the darn diaper. I attribute all of her decline to not enough staff to properly care for her

She had some compression fractures, probably not as severe as hip fracture like your mom. You can also be assured she is no being neglected under your care.

Talk to the social worker at the rehab to line things up - in home health, pt, etc. Then get phone numbers for everyone/everything they say they lined up for you and CALL YOURSELF to confirm. Start finding medical equipment that you'll need - potty chairs, walker, wheelchair. Medicare has to have the 'medical need' verification before they approve certain things like the bed, wheelchair or walker, so NH doctor or her own doctor is going to be completing those forms. Once you have a release date, you call all of these providers to make sure the equipment and her arrival home match. If you need to pay a few days for the bed, do so to get it there on time.

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Just want to be the "other side" here.
My Husband was over 6 foot. He was over 250 at one point during the time I was caring for him.
I managed by myself with first a Gait Belt then we went to a Sit To Stand and lastly a Hoyer Lift.
It is recommended that a Hoyer Lift be used with 2 people assisting One person the push the other to guide the sling so that the person being moved is not swaying or getting bumped into things.
But we managed. And when I had caregivers here they were also able to manage with just 1 person.
I just wanted to let you know that it is not impossible.
With the help and support that I got from Hospice I think we did very well.
The important thing for me in ALL the caregiving that I did was SAFETY.
If it was not safe for HIM for me to care for him at home I would have had to place him in a Memory Care Facility.
If it became unsafe for ME to care for him at home I would have had to place him in MC.
Again contact Hospice.

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If your mother's wish is to go home, there should not be any problems. If she is competent, no one can force her to go to a NH. It is her decision.

Talk with the SW at the Facility. She should be the one to line everything up for your mom to transfer back to her home. It shouldn't take long to get everything in place. A week, maybe.

I am glad you are able to take your mom home and that you have siblings that can help.

We only have one chance at this thing called life. For you wanting to take your mom home and you and your siblings take care of her, that is a blessing. If you can't, that is understandable.

I've witnessed time and time again what goes on in these facilities and I'm not pleased either.

It may be hard but you can do it. Your mom will be appreciative.

You know as well as I, no one will love your mom the way you do.

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Thanks for your response to an earlier post.

I had absolutely no idea how hard it would be to care for an elderly person in my home.

We get so emotionally caught up in our love for our parents that we truly aren’t looking at reality.

Of course problems exists in facilities and it’s important to face issues as soon as they happen but situations arise at home as well even if we are doing all that we can.

We catch ourselves saying, ‘Where there’s a will there’s a way!’ Yes, maybe for awhile but in some cases we are only buying a bit of time and causing ourselves a lot of heartache in the process. We aren’t trained professionals that automatically know what to do during extremely challenging times.

Of course you love your mom and placing her in the best facility that you can find is providing love and care. Also enlist the help of hospice.

I feel your pain and I so wish that I could take it away from you. Please don’t jump into this out of feeling obligated or guilt.

You will be biting off more than you can chew and live to regret it.

Once you start being a caregiver you will lose a part of yourself. You also lose being a daughter. You become a full time caregiver. It’s simply too much!

In retrospect, I would have done many, many things differently.

Start reviewing other care facilities now.

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Yes, I've already responded and I am sorry. Just take situations like this seriously.

The very first thing you stated is "You have a heavy heart." That lets me know, you are not happy with your mom being in a Nursing Facility. Can I tell you something? I do not blame you. If it was my mother, I would fight with every breath I had within me to keep her from having to go into one.

Your mom is very young to have to live in a facility. She is probaly not happy there either.

I can not tell you about anyone else's experiences with Nursing Facilities but I can tell you about mine. I will tell you, they were not good ones.

When visiting Nursing Facilities,( Mostly are Memory Care Units) I like to observe. What I observe is the Nurses/Administrators greeting you with a smile like everything is all good in their world. However, when I look at the residents, there is another story.

You can just look at the countenances on the residents faces and tell they are not happy there. They appear to be just somebody back up against a wall, sitting very quietly, looking sad and lonely.

Have you ever heard the saying, "There is no place like home?" Couldn't be a truer statement. I can ensure you, your mom will not receive the same love and care that you can give to her. We are living in times where there is not much LOVE for people any more and it's all about self gain and materialistic.

The facilities want you to think it is all lovely and that your loved ones are receiving the love and care they need. From what I've seen, that's not true. (There may be a good one somewhere but they are few and far in between).

I've witnessed residents being mistreated and disrespected by staff. I can tell you about both of my grandmother's who had alz.

My dad would have to go to the Nursing Home (Memory Care) every evening at dinner to feed his mother, otherwise, his mother would never get to eat. The nurses don't have the time.

My other grandmother ended up in the hospital with pneumonia. Guess what was found on her chest? Handprints YES, I said handprints.

I'm sorry. I know I have rambled but stuff like this gets to my heart. I've shared what I know about facilities and it is in no way to make you feel guilty. It is your mother and your choice. You know what's best for your mom.

Hope things work out the best for you mom.

SN: A dear lady down the road from my home was bedridden. Her only child, her son, cared for her. Never once did he complain. Of course he had cousins to bathe her but the rest he did.

Blessings to you.

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Hailey,

Her profile says 60. That is young! But in an earlier response to me she says that her mom is 91. So, maybe the OP is 60. Regardless, it’s a typo. Her situation is very sad.

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Thank you all for sharing your stories. To clarify, my mother that I am speaking about is 91. This journey seems to get worst daily. She is right now in hospital due to low hemoglobin levels but after receiving blood they said she is very stable which is great news. However, they said the bedsore is very serious and I have learned that they are typically 90%+ preventable. Obviously, the NH was not repositioning her every couple of hours. She is also diabetic which affects the healing. According to the medicare.gov website that has a NH compare tool that includes actual reports from Dept of Health, this NH has a 5-star rating and no active Covid cases which was a big part of our selection process with the few NH that were accepting new patients following her surgery. However, the ratings/reports are late 2019 prior Covid. Perhaps there was a turnover in staff after Covid that resulted in this apparent neglect. Originally, this was for PT/rehab but she still cannot even stand. Perhaps they did not do the PT/rehab properly either. We are now waiting to hear back from case-manager at hospital about where she will be discharged to. We will have to start the NH search again. After reading so many responses and talking again with siblings we are not certain about the reality of being able to provide in-home care. I am confused and overwhelmed.

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I am so relieved that you are not going to jump in and bite off more than you can chew. By letting go of this enormous responsibility you will feel the weight off the world off of your shoulders.

Just because caregiving at home is right for some people doesn’t mean it is right for everyone. Don’t allow anyone to cause you to feel guilty. It is your choice to make, so do what is best for you and your family.

It is very sad that your mom ended up in a less than par nursing home. Don’t let that deter you from finding a home that she will receive good care.

In a non judgmental way, don’t hesitate to let the facility know that you plan on monitoring her care very closely.

Please remember that placing her in a nursing home is best for her, you and your siblings. Her care requires more than can be given at home. She has very serious issues.

This has absolutely nothing to do with a lack of love. In fact, it shows enormous love by allowing her to be cared for by a professional staff that you and your siblings can keep a close eye on.

Contact hospice. Hospice nurses are angels. They also provide a social worker and clergy.

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Your mention of a bedsore really concerns me. Your mother is not getting good care and I think you should do everything in your power to get her transferred to another rehab facility and try to get her recertified for more rehab even if you have to move her further away.. I do not think this rehab place is seriously involved in getting her back on her feet. If she has a bedsore, she may also have a UTI from sitting in urine all day. If you are in a rural area with only one nearby nursing home, I can see why you believe she would be better off at home. If you have siblings who will take shifts and think your mom may be hospice eligible, going in this direction seems like a very good idea to me, especially if you know someone who could augment your care in the CNA role.

Your first step is to get her better rehab and then have her discharged into your care. Get a hospital bed through Medicare’s durable medical equipment program and immediately apply for hospice. Research Medicare rules and apply for everything your mother is eligible for. Apply for a meal delivery program to get some of her meals delivered. See if you can get a lift supplement from Medicare. Call your area wide agency on aging representative and asl for help navigating your local resources. Above all, do your homework about Medicare and Medicaid services on line. Immediately get involved with the hospital social worker to help you make plans to send her home or to another facility, Hospital social workers know the rules and local resources.

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Thank you for your response. She is being discharged from hospital to a different facility that we are familiar with and is where we originally tried to get in but they had no availability at the time. We also know people that have had loved ones at the new facility or have been involved with them through work and have high regard for the facility as well as DOH and Medicare reports. Right now, the bedsore is the biggest concern and causing her much pain. The hospital has been treating it including having a wound nurse look at it. They said it is not infected. I did find out that the hospital record shows that hen she was first brought in right after the fall shows that the skin was already cut in that location which is near the tailbone perhaps from the fall or being on the floor for several hours. It went from broken skin to what it is now and I believe is due to the NH not repositioning her and kept her in one place such as a wheelchair for hours on end. The good news is she said she can move her left leg and a little of her right leg (the one with surgery) when in bed. Previously, she said she could not move her legs, just her toes. We are hopeful and praying she will have much improvement and relief from pain at the new place.

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Heavy heart, wanting to move mother out of nursing home and back to her own home. How/Where to start?

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