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.
My mother moved in with me about three years ago. She is able to walk to the restroom, which is off of her bedroom, and we use a portable potty chair right by her bed at night. She doesn't walk much (and has no desire to walk more) but I am glad that she is not "incontinent". I feel that if your Mom wants to walk again, there's still hope that she can - and I feel for you both. It's a dilemma. My Mom is on the Home Health Care program through her insurance, Presbyterian, and they have been amazing with her. Maybe there is such a program in your state (it seems to be a pretty progressive state) such as that to where she could either move nearer to you or in your home. It's definitely a (I'm not going to sugar coat it) big challenge, but if it's something you want to try, well - it's a mixed bag, with its benefits and its drawbacks. See if there's a Long Term Services Division in your state that will send you an application so that you can receive some compensation or aide services, etc. I wish you the best - you are obviously a loving person!
She also might be depressed because she was living with brother in law caring for him somewhat. Thats a big responsibility. Do they get along?
What social supports does your mom have at home? Is she home with brother in law 24/7? She may need other social outlets to gain some purpose in life. That could be contributing to her depression and all these ailments, not eating right, and subsequent femor break?
It is not impossible to move someone closer to you. It might be better for her.
You can also call her county's office of aging. They can talk to you about what options are available. Reaching out to others/friends will make you feel less alone.
Make sure you keep up activities and to do some fun things too. You have to take care of yourself in order to take care of her. Good luck. Let us know how it goes.
Companies make thicker waterproof pads out of breathable materials. I find even a $20 reversible comforter, folded in half, put under sheets on cheap hotel beds helped so much, I don't travel without one.
Work with NH to make the bed more comfortable. Mark anything you buy clearly. Make a sign to post above bed and on footboard to instruct aides and cleaning staff!!
Buy a quality pillow protector and bring her favorite pillow from home in a colorful pillow case....again, mark it clearly with her name. If you can, have it seen in.
This might help.
Also, bring her favorite lotion. Rubbing my mom down with a soft vanilla scented lotion, with Shea butter made a huge difference I the hospital. It masked the Hospital Smells.
It also made her room smell so nice..but not overpowering, that staff would stop by frequently, to check it out. These inquisitive checks, a pleasent break for them, meant they also noticed other small changes, improved care, more social.
I never knew when PT would show up. So I might have been about to eat, or just had three other services and really needed a nap.
While it is illegal, many NH want to clear that spot for someone with better insurance. If you are on Medicaid, or have a stingy private insurer, they want to kick you off services fast!
If you can afford it, this is my suggestion. Give her a break from PT for a week, then have them start on in bed strength, then towards walking. You may have to self pay, but this is cheaper than quitting your job.
It also gives you leverage. Call the head of the NH. Find out what are her best times of the day. Ask your Mom which PT she likes. Request that she get that therapist, a set schedule at her good times of the day.... don't pull her out from lunch, make her rush eating and socializing, etc. After all, You are paying.
Get copies of all treatment and progress notes! After a few weeks, resubmit them to her Primary Care Physician ... the one she had before the NH ( if that changed) and the insurance. Push Medicaid to pay. She will get worse if she only gets bedpans, or has to wait for staff to even use a commode next to her bed!
NH are so afraid of liability, they will not let you stand next to your bed to get an item from the waredrobe. Or transfer from bed to commode or wheelchair once you are able, without staff to supervise, and have a hate belt on. No wonder she is miserable. If I did so, I was scolded for being Non-Compliant, and Threatened that they would report this to my insurance! Who wants to be scolded for doing what you can when you start making progress, and bedbound in need because staff is busy.
Perhaps take a few vacation days, secretly get a doctor's order or note from state representative in Ohio, to allow you to visit 24/7...over ride their policies! Then visit, stay all day and night. Pop in and out without warning. They will pay her more attention, but do this for several days, then do it a few times. Find out what her day is really like. Find out what PT has been doing, and what they planned on doing, if she was making progress... details!
First, this will improve her quality of care and life more than weekend visits. Which might be enough to make a change.
Seond, if she knows you are paying for her PT, even if she refused, that may guilt her into participating. It is worth some vacation days or Paid Family Leave Time, to do this.
The other side of the the coin is, when I had been able to go up 3 steps with 2 aides, one of whom assisted me by the gait belt, and the other helped hold the weight of the walker. I did that twice, then had to be rolled back to my room exhausted. Then I went to the hope for testing, straight from an off site doctors appointment. I didn't pay to hold my room, & NH declared me strong enough to go home alone. I had steps, some without railings, to get into my house. No help at home!
Weekend visits help. NH are staffed down on weekends, expecting visiting family to help at mealtime, perhaps take people out for an excursion. They don't do OT, PT, or Speech/Swallow Therapy on weekends. They won't scold Mom I front of you.
So you have to be a bit sly. Listen in on what is happening with other patients. Do Not do NH job for them during these visits. Note the difference you see, and let your mom know before you leave.
She will also see that even if she left, things would not be as she expects, or imagined. Being sickly and unable to care for yourself sucks! The NH helped, but also did things that made me worse! I eventually recovered, but had to sell my house and move out of state to an apartment with no stairs. I went months with no Medicaid. It took 2 1/2 years to get in home services.
Are you sure she is being completely truthful with you about her health conditions? Does she give you unrestricted access to her medical records? Do you speak to her medical, nursing and care staff yourself?
It's that passing mention of her having left ICU three weeks ago that's making me frown. What would you say is her main health issue?
You and your husband should not make any irrevocable decisions until you have a lot more clarity. I suppose I'm wondering if your mother is possibly trying to shield her newly married daughter from trouble.
One thing you can point out to her, in any case, is that you can only give her the best support if she shares all the information you need. It may be that home is the best place for her, and that it could be made into a feasible plan. But that is always going to depend on a complete assessment of her care needs.
Explore all your different options, call social services and talk to one of their adult services people if you have not already, they will know the different programs out there for your mom, and not just the ones in NYC call someone in her area as well.
I will say living with and taking care of my dad is one of the hardest things I have ever done and I say to myself at least once a day “ I don’t know how long I can do this” each day he regresses a little farther into his Alzheimer’s.
I know what you are going through as I have had the same battle. In my case I am out of state, but my sister is local. This is a constant battle and I think you have to move your mom to the state you live in as you need to meet with these people in person to resolve issues.
“PT is going to stop working with her because they don't feel she's made enough progress “
Man I have fought this battle. I am talking BIG fight with the PT. The law clearly states you do not have to make progress!!!! It is so frustrating dealing with a SNF.
" The improvement standard was illegal. Medicare providers had conjured up a standard out of thin air, and to devastating effect. "
https://www.ncrp.org/2018/02/the-center-for-medicare-advocacy-can-build-on-past-victories-with-long-term-capacity-support.html
The Center of Medicare Advocacy filed a lawsuit regarding this specific matter in the case of Jimmo v. Sebelius. The outcome of that case is there is “No” Improvement Standard required for Medicare to cover skilled nursing and physical therapy. A doctor can order PT just for the patient to just maintain or not degrade.
Pub 100-02 Medicare Benefit Policy again stating the changes regarding Medicare Policy due to that lawsuit.
http://www.medicareadvocacy.org/wp-content/uploads/2018/08/Checklist.pdf
https://www.cms.gov/Regulations-and-Guidance/Guidance/Transmittals/Downloads/R179BP.pdf
I even talked to the lawyer that was involved in that lawsuit. The problem, is having said all that, you are dealing with a bureaucracy and nothing is easy. First you need to call the Ombudsman for your county and go over with him what is happening and the law about progress not required and setup a meeting with the Executive Administrator to go over your mom’s condition and why she needs to continue with PT.
What happened in our case was the administrator checked out mom and then assigned a more experience PT who deals with elderly.
“Moving home is nearly impossible as my husband and I would both have to quit our jobs which is a big risk”
Medicaid rules vary per state and you need to learn the Medicaid rules for your state. I think the best thing is move mom to your state. But there might be another option. I don’t know your mom’s finances except she is on Medicaid, but you can be on Medicaid and still have an income. So maybe an assisted living place might work. Again the rules vary per state, but in some states Medicaid will at least pay the cost for caregivers, but normally not the Cost of room and board.
And don’t let other people tell you assisted living will not take your mom, as that is what everyone told us. Different assisted living places have different rules, so you have to call around and discuss your mom condition. Right now my mom is not mobile and in Hospice at an assisted living. The assisted living feed her and everything, but they do charge extra for that level of care. I must add my mom was in this assisted living before she became immobile and they knew her and I doubt they would take someone off the street in my mom’s current condition.
I can tell you one more thing my mom hated the SNF, everything from the aids to the food. Prior to this mom had gone into a SNF before and hardly improved at all and then when she got back to the assisted living she made great progress with PT at the assisted living.
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.
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.
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.
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.
Go online to the Aging Life Care Association and you can find a geriatric care manager in her area.
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.
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.
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.