Hi all - I'm new to this forum but looking for any advice. I am 30 y/o, newly married and living in NYC. My mother is widowed and lives in Ohio. Currently I'm her long distance care giver. I fly home 2x a month and I am on the phone nearly all the time. A year ago, mom was independent and living with her mentally handicapped brother in law who had his own aide services. After a broken femur, a bone marrow disorder scare and a plethora of unrelated health concerns, she spent the better part of the last year in and out of hospitals and nursing homes. She's currently in a SNF but transitioned to Medicaid because Medicare coverage ran out. She is miserable and desperately wants to return home. I'm struggling on what to do. PT is going to stop working with her because they don't feel she's made enough progress (she left ICU after an infection 3 wks ago so I do feel this is premature) and she's combative and depressed. She wants to keep trying, but they won't let her learn to walk again because they don't feel that it's going to improve.
I'm struggling as a caregiver what to do. Moving home is nearly impossible as my husband and I would both have to quit our jobs which is a big risk. I can look into waiver services for home health but she cannot get to the bathroom alone so it would likely be full time. We've considered moving her with us and hiring home health but Medicaid doesn't transfer state to state and the process is daunting.
How long until it's clear mom will no longer improve? She's so young and has no dementia diagnosis—she's just depressed and wants desperately to leave and isn't getting stronger. I have no idea who to talk to because no one my age has gone through this yet. I want what's safest for her but also what will make her happiest and I don't know that being in a nursing home at 69 will make her happy.
I agree with the posts, Mom is not going to get better. 69 is still kind of young to have the health problems she does. If no Dementia now, she will eventually have it. My suggestion is to have her remain in the Nursing home with Medicaid paying the bill. Maybe find someone who will check on her for you. At your age and with the economy the way it is, I would not quit your jobs. Remember, you are now married and your decisions effect your husband too.
Your responsibility to Mom is to make sure she is safe, fed, clean and cared for. Its what she needs now not what she wants. Tell her for now she needs to stay in the NH to get stronger. You will need to see how she progresses to determine what the next step will be.
When doing therapy, Medicare will not pay if she is showing no signs of improvement. Talk to the head therapist. Tell her Mom seems determined to get better. Ask why they feel there will be no improvement?
"I am caring for my mother Linda, who is 69 years old, living in a nursing home with age-related decline, arthritis, broken hip, depression, diabetes, incontinence, mobility problems, parkinson's disease, and vision problems."
This is a lot of problems for a 69 yr old person. If she goes home, who will take care of her, because to have medicaid, she has no money for caregivers. Poor lady, I would be depressed too. No one person could care for this woman. Parkinson's will progress and Dementia will set in. They go hand in hand. Since she is breaking things, good reason to keep her in the NH. Fall risk.
So sorry you need to make this decision.
My MIL was in a SNF after surgery, and refused to do PT. One of us told her point blank that she had to work at PT, or stay there the rest of her life. She chose to work at it. It sounds like this does not refer to your mother, however, as she has multiple health issues. She sounds like she needs round-the-clock care. Big hugs and good luck to you. It's not easy to accept.
However, her needs dictate what kind of care she requires and it is 24/7/365.
I am sure you are feeling fear, she is fairly young and very ill, obligation, she is your mom after all and guilt, she's so unhappy and I have this life....it's called FOG and it is not a position to be making life changing decisions from.
You are just starting your life and as hard as it sounds, she's had her life, she could live 20 years in this condition and that would be so unfair for her to take 20 years of your life.
Medicaid will not pay for 24/7/365 in home health, it is cost prohibitive and the taxpayers would not have a penny left if that was offered. Can you and husband afford 20 - 25 dollars an hour (maybe more in NYC) to cover what Medicaid doesn't cover? Can you afford to quit your job, stay at home, become isolated, never have 1 minute privacy with your husband, never attend another social event, birthday party, wedding, christening, or just get your hair done? Because that would be your reality. So you would not just be unhappy you and your husband would be miserable, resentful and maybe divorced so she doesn't have to adjust to her reality.
She is making a choice to not adjust and to learn to live where she needs to be. You did not do this to her, please do not give up your life for her happiness. She is where she needs to be, it sucks and it seems so unfair but it is her reality and she needs to be encouraged to find happiness where she is. Activities and socialization need to be encouraged by you for her to make friends and let you have your life.
I would recommend not going to visit as frequently and don't take every call, she needs to do this on her own with you cheering her forward, right now she is strapped tightly around your throat and you are being dragged down. I know it is hard but you are now the adult in this relationship and you will have to make decisions based on need and not want.
You can do this and she will be okay in a NH, her needs dictate that is the best place for her, now and in her future. Please do not forfeit your life to try and make her happy.
Sorry for the book I am just sick with the options you are looking at doing.
We live in rural TN and have found in home CNA care through a local agency or direct hire to be very workable. I'm not sure the experience would be in the same in a metropolitan area of NY. Is your mother's OH location rural or big city too?
Since you and your husband have a full time job, I would suggest trying to find a good agency as long as your mother needs 24/7 coverage. If she improves to a point where she doesn't need someone there all the time, the a direct hire of a couple of retired nurses, stay home mothers with school age children, homemakers with grown children, etc. may work well.
Since your mother got out of ICU just 3 weeks ago, she may not be recovered enough to have the endurance necessary for a full PT program. I was in the hospital for 10 days followed by another 45 days of IV antibiotics for an aggressive infection at age 48 and it took me over a year to fully recover my previous energy levels. When my mother lost a high blood volume during hip replacement surgery at age 64, it took her about a year to fully recover too. Neither of us had the assortment of health problems your mother has. She may need time to recover while she sits in a recliner and does various non-weight bearing exercises to build endurance.
Another option you may want to investigate is smaller group nursing homes, maybe where none of the residents have dementia or are younger like your mother. We have some in our area that have as few as 8 residents in the home.
I encourage you to begin thinking of both short term and long term plans. Short term you may bring your mother home with 24/7 in home care and see if she improves, then engage in home PT. Long term would probably include relocating your mother somewhere within a hour of your home in a good care facility according to the level of care your mother needs and is likely to need in the next few years.
Based on my experience caring for my in-laws and MIL who had a neurodegenerative disorder that eventually caused her death, safety is always first. That is your new role - to keep your mother safe. Your mother may never be happy again and you cannot control her happiness. But you can control whether or not she's safe.
Just to give you an idea of how expensive in-home care is: we spent $38,000 a year on *one* 8-hour shift Monday through Friday, for an aide for my MIL. She helped my MIL for 2.5 years for a grand total of $95,000. And for the last year of her life, we *also* paid $25 per night for someone to come and get her ready for and into bed at night so that cost $9,125.
Read Roz Chast's "Cant' We Talk About Something More Pleasant?"
As others have said make sure her life is safe and she is properly cared for and under no circumstances move her into your home.
Do you want to have children? Can you imagine trying to cope with aa screaming infant at 2 am when Mom is demanding her bed be cleaned up.
She has ruined her life do not let her ruin yours. Hugs.
You asked for ballpark prices for home care on a previous comment and I have some I got this week from a local agency in upstate NY. I’m getting Mom a companion for a few hours in her NH to try to keep her more calm at night. You could probably hire someone to visit your mom daily for a few hours at the nursing home, just as a companion to cheer her up a little. Maybe her mood would improve without moving her anywhere, while you try to figure out what to do. No idea if these reflect a national average or not but they seem reasonable for around here from what I’ve found.
Hourly:
RN 80 per visit
LPN 55 per visit
Home health aid, 28 per hour, 3 hour min
Personal Care aid 25 per hour, 3 hr min
Companion/ homemaker 22 per hr, 3 hr min
Daily based on 24 hour shifts:
HHA 645/day
PCA 575/ day
companion /homemaker 485/day
I work part time with a Lady Who is 69 years of age and She Cares for Her 103 year old Mother at home in Her own Home. Here in Ireland the statistics are such that two thirds of Residents in full time Care at Nursing Homes could actually be Cared for at Home.
After two years, she still talks about going home which is very painful to hear. But, thanks to this forum, I realized that I would never be able to provide the type of care she gets in the SNF.
One suggestion for you would be, could you find a SNF closer to your home? Then you could see her more often at less expense to you. Good luck. It's not easy...
You can appeal Medicare's decision to end PT.
One biggest kink to moving my mother to NYC is that she used to care for my uncle (he's mentally handicapped). He will be getting care of his own in Ohio now, but he desperately loves her and I worry that moving them apart will be detrimental to him as well. He cannot travel much nor could she if she moved.
Edit: She will have to be evaluated before she goes into AL, but there are a few AL homes so far that felt the preliminary paperwork provided by the nursing home proves she could possibly be a candidate for AL.
I know it will be difficult for both your mom and uncle. Would it be possible to use FaceTime or Skype so they can visit? Also, many cards, letters, photos, all to help them keep in touch.
This is not an easy decision to be made. most of us dealing with this ( or have dealt with), had much older parents. Does mom use a wheelchair? Did she have activities she was doing before everything went downhill? Maybe where she is offers a lot to do to take her mind off not being home? It is not easy to make the right decisions for everyone. It is very painful to hear them plead to take them home, but you have to be the strong one, You are not abandoning her, you are trying to do what is best for all involved. You have a family too, and it gets too easy to put mom first from guilt ( been there, done that). It will not do anyone any good to let yourself be manipulated. Especially since mom has all of her faculties. Believe me, they pull out ALL of the stops! I am sure it is a lot more difficult be away & trying to coordinate all of this. I wish you the best.
Like many of the replies, your mom needs are far more care than you can handle. A SNF is the best care mom can recive now.
Start looking for a SNF and plan to transfer her Medicaid. My guess you might find better facilities in northern NJ. or upstate. Speak with an elder lawyer. Many will give you a quick phone consultation. Or hire one to get the process rolling. Otherwise find a social worker to help you transfer mom's Medicaid to NY or NJ.
Mom may or may not understand why she needs care and why she can't live on her own or with you. At least having her closer will lessen some of the stress involved with caregiving.
Good Luck! It will work out.
Go online to the Aging Life Care Association and you can find a geriatric care manager in her area.
I would suggest looking into an 'Adult Family Care Home or Adult Assisting Living' facility, sometimes they call them 'Residential Family Care Homes'. They are residential homes that take care of your loved ones. Your loved one is in a family setting and the loved ones are much more happier. Most are private pay but there are some that do take insurance. You would have to research and find out if there are any in your area. Do your due diligence just like anything else. There are good ones and there are not so good ones.
The difference between the two levels has to do with how much PT a person needs. They calculate it in hours of services that include physical therapy, occupational therapy, wound care, iv medication delivery, etc.
https://www.burke.org/inpatient/admissions/what-is-acute-rehab
Femur fracture is often considered worthy of acute care. I don’t know if she has stepped down from acute to sub-acute already, but acute care would be preferable, especially with complications.
Are you generally happy with the nursing rehab facility she’s in? Is there a better one in the area that also takes Medicaid? Have you attended the care plan meetings (even if by phone)? The physical therapist has a lot of power in the situation, based on how they write their recommendations and record progress. However, it is the doctor that writes the prescription for PT.
First, you have to get to the bottom of why they are saying she is not making progress. Are they scheduling her PT at a time of day when her blood sugar is off and it’s more difficult for her to be motivated? Then they need to schedule it differently for when she is at the better part of her day. Is she going to PT, but in too much pain to make progress? Then they need to address her pain management. Are they scheduling PT at the end of the day when she’s too tired? Then it needs to be earlier. Talk to her and see if she can describe what conditions might make it easier for her to make progress.
Then, talk to her doctor about what they can do to make adjustments. Doctors in these places tend to only come in once a month. So, the first thing to do is to get a hold of the doctor, and talk to them directly. Speak to them about the “combination” of things that make PT necessary, and your mom’s young age, and her desire to meet her goals of recovery so that she can eventually get home and be more independent. The doctor can reauthorize PT.
Then, call a meeting with her care plan team to get to the bottom of things from their perspective. It’s their job to “create the conditions for progress.” If they are not doing that, they are not doing their job. Include the nurse supervisor, the social worker, the physical therapist, and anyone else who is relevant. Focus on ways they could design her program of care to “help her achieve success toward her goals.” Treat them as partners in achieving this success. Think of yourself as an intermediary communicator between your mother and the team. Patients are often too compromised by the stress of their condition to think clearly enough about what they need and how they can ask for it. Try not to be adversarial. Think of yourself as a coach and team leader getting everyone on the same page, and motivating them to make it work.
However, if you get the sense that they may just not be able to help her, consider looking for another place. Interview the PT people and nurses at the other facilities, and ask them how they would overcome some of the roadblocks to her recovery. Check out who the facility doctor is, and talk to them. See what their ratio is of patients to nurses to aides. It’s generally better to have a more skilled nursing staff, which consists of a higher nurse to patient ratio.
If you find a place that seems capable and eager to have her and work with her, have her transferred as soon as a bed becomes available. The staff of the new place will help you coordinate that with the staff of the old one.
I’ve been through this a lot with my mother-in-law who broke her hip and has dementia, and my father-in-law who has Parkinson’s and had a stroke, and my sister-in-law who has MS. You have to be your mother’s best advocate for what she needs, and take a hands-on role in identifying the impediments to progress and finding solutions to overcome them. You can do t
For now, I'm determined to get her to another facility while I look for longer term options, one with a more willing and understanding PT department.
Also you said she is on Medicaid. If you choose to let her live with you she may lose it because they go by "household income" -- and it's up to the state how they interpret that.
Is your mom compliant or combative? I ask because she could be giving you a different story than the reality.
I am not trying to be harsh, your mom has a whole multitude of serious medical conditions. I know 69 is fairly young, however, she may be physically worn out. Unfortunately not every body lives a long time.
How long has she been sick? You may need to prepare yourself for the reality that this is as good as it will ever get for her.
I am sorry that you are having to face this with your mom but it is not sudden and it is serious.
She can do exercises on her own if she is really determined and able to improve, they have shown her how to do strength training in bed and her wheelchair, guaranteed. It makes them more money the longer she is improving and getting PT, this would be covered by Medicare.
Are you able to talk to the therapist and ask them to be honest about her efforts at improving? I was lied to and made myself look like a complete fool as I was advocating for a fantasy.
I pray that you can get to the reality of the situation so you can make good decisions.