She started on the third day wanting to go home. She has a mild cognitive disorder and doesn't understand that there's more to her therapy than walking to the nurse's station and back. We keep telling her it's up to the doctor/staff when she will be released, but she doesn't believe us. Now she's on day 20, and they are saying they are concerned about her safety living alone so they want to keep her a while longer. She can't qualify for Medicaid to pay for AL due to slightly exceeding the income limit. She asks daily if she is going home today, and the staff is so vague and won't give us any kind of timeline. Do I keep her there being miserable but safe, or take her out against medical advice where she may be unsafe at home but happy? I can only afford someone to look in on her for about 10 hours a week. Family visits on the weekend.
I know with Mom it was "We are sending her to Rehab, which one do you prefer" If I knew what I did later, I would have said "No, set up PT at her AL". With Dementia her experience was awful. She was in a wheelchair most of the time only having PT for short periods. Activities "would you like to make a card" to a woman who did not understand the aide. A GP took it upon himself to stop Moms Graves desease med because her levels were normal. THEY were normal because...she was on medication and had a Specialist I think should have been consulted before another doctor takes it upon himself/herself to change a medication. I was told she would never walk without assistance even with a walker. They kept her for 18 days after I told them there was no money after the 20 days that Medicare pays for. She got back to the AL and within 24hrs was walking all over with her walker.
Lea was aware that she could change Rehabs and that is what she did. So her experience ended well. But I live in Low populated area. We don't have too many options. Yes Medicare goes anywhere but supplimental insurances and Medicaid are State based. Medicaid limits you where you can go. What you need to know is what your rights are as a patient. If you feel a facility is not doing their job, you have government agencies you can complain to even your insurance companies.
What I remember from Moms stay was a fellow classmates Mom who had broken her hip which can cause death. Mrs M was in with Mom. Her two children were there everyday. This one day I was leaving and she was sitting in a wheelchair in her room next to a window that put her in silhouette. She was in almost complete darkness sitting with a blanket around her shoulders with her head down. Is Rehab really worth it when the person gets depressed being there. She made it home but died not long after. Yes she was probably 87, Moms age. Yes, she broke her hip. But, did the Rehab experience hasten her death? I for one dread the thought of ever being in a hospital or Rehab for any length of time. Both are depressing and I can see where delirium sets in. No, I will not be a good patient. 😏
A better approach may be to start discussions with her about how to make her current living arrangement more enjoyable for her. Then, follow through with whatever options the administration will allow and that will make her happier.
In 2019, my Mom, living completely independently prior to this, fell and had a compound fracture of her leg. To this day, she and we have no idea what she did. She was 97 years old and was forgetful, but nothing to make us think she had dementia.
She had to be moved out of the hospital, so we got her into the first rehab hospital where she could only stay for 11 days. She hated the place, however, they had her up and walking for 100 feet by the end of the 11 days. I could transfer her in and out of the car. She was in severe pain and tolerable pain the whole time.
She was then transferred to another rehab hospital because there was no one at home to take care of her. The PT saw that she was 97 years old and said I should be thankful she is alive (I relish the day when he is in intense pain and someone else tells him that). The nurses used to come into her room and hide out while they looked at their phone. They would tell her to ask for cookies and snacks so that my Mom would give it to them to eat. She liked the breakfast, but hated all the other food as it was over-salted and overcooked. She would call for the nurses and they would NOT come in a timely manner, hence she went in her diapers a lot. She was in constant pain and PT was not helping her with balance or walking.
I cut a trip early so that I could get her out after about 30 days. She couldn't even hold herself up to walk to the bathroom from her bed. She slumped over in her wheelchair. She couldn't stand for more than 5 seconds, not even with her walker. She had the look of a zombie and in my opinion, she was worse off than when she was admitted.
You can read my other posts about what I did to rehab her to get her out of the wheelchair.
Fast forward 1.5 years. All those behaviors that we thought was old age (going to the bathroom throughout the night, repeating, unable to remember events, etc), was diagnosed as MCI (Mild Cognitive Impairment). She has no memory of rehab hospital #1. Her memory of rehab hospital #2 was that it was such a nice place, the food was excellent and the people who worked there always came when she rang the bell. Yes, she doesn't remember the pain or any of the complaints she had. She claims I am lying.
So, the question of whether you take her out or move her, is a decision only you can make. To make it, requires you to be there and see what is going on and decide how much you want to be involved.
a. Is she improving? Is she improving fast enough for what you are expecting?
b. What are her specific complaints? (usually it is because people don't come fast enough....yet when she is home, it probably is not going to be the way she imagines it to be either). Can you address her specific complaints?
c. If she is not in good enough shape to go home, is there another rehab hospital that you can move her to, that will get the improvements needed so that she can go home?
d. I suspect the reason why the staff is so vague is because her MCI is bad enough that she really does require 24 x 7 help at this time.
Rehab hospitals do have social workers and people who do help place their patients in other facilities.
Your Mom may never be happy, even in her own home. She probably has no idea what she is and is not capable of. My Mom insisted she could dress herself, yet, we had to help her put on her clothes. She insisted she could bathe herself, however, she barely got wet. My Mom attempted to wash dishes to prove she could take care of herself, and crumpled to the floor when she couldn't stand at the sink longer than 30 seconds. Then she couldn't get up because her muscles were too weak. That was when she realized some of her limitations.
I would have a heart-to-heart talk with the social worker (or patient advocate) at the rehab hospital and see what they recommend.
Best wishes.
It would be good if you could look into what kind of things her insurance will cover that is not income based. For example a visiting nurse and what therapies are needed. That way you can get her care right at home. The 10 hours a week may not seem like much, but it really can be. Find out what times of day she needs the most care and arrange for them to come at those times.
God Bless you! Praying you can help your mom get out soon!
What can be gained by her staying longer? Is she getting stronger? More importantly, are they trying to tell you it’s an unsafe discharge no matter how long she stays. If she can’t afford assisted living, you might need to think about bringing her to your house until she becomes eligible for Medicaid nursing home care. Your explanation about her eligibility for assisted living also doesn’t seem correct. Have you actually applied or are you taking someone else’s advise or experience?
Day 20 is the last day that Medicare will pay 100%. The 21st to the 100th day Medicare only pays 50%. The other 50% is paid by the patient or their secondary insurance fully or partially. When my Mom was in Rehab just to get her strength back I told them there was no money after the 20th day. Moms secondary did not cover the 50% balance. She was discharged on the 18th day. She had Dementia and all I heard from the therapist was she couldn't follow instructions or remember her exercises from day to day. Duh, she had Dementia.
Medicaid does not pay for AL. Unless your lucky to live it a State that does. In my State u need to pay privately for at least 2 years to have Medicaid pay.
While Mom is in Rehab have her evaluated for 24/7 care. She may not be able to be on her own anymore. She can go right from rehab to LTC or an AL.
IF your mother is never able to live on her own again, you might need to doing some longer range planning.
I went through the same thing with my mother...keep in mind--IMPORTANT--if they come home (your mother) too early the insurance will not cover any of the time spent there.
Be sure you know "beforehand" what you are doing. It broke my heart when mother had to go for 10-days during Eastertime for a "short-term rehab" directly upon discharge from the hospital.
It was in the neighborhood, during the Pandemic--the people were wonderful but Mom was like a kid going off to Summer camp and calls to come home.
I simply showed up everyday, held her hand, told her she has a family who loves her and a home and will be coming home once she has her rehab for going up stairs.
You are allowed to "switch" facilities. When I had the VNA come prior to this illness, they "the VNA" were always able to get Mom back on her feet. This time it didn't work so I Mom had to do the "short-term" rehab (10) days which seemed like eternity.
No facility is going to discharge without a "safe discharge". No one wants the liability. I don't blame them. They have to follow their protocol.
Nighttime is the problem when the elderly live alone. There are "day" respite programs but who would stay with your mother at night? This is usually the issue.
If your dad was a Veteran there may be assistance there. Half of the country is going through this. They are in the middle financially,--not rich, nor poor but need help because they have to work and it breaks your heart when they call to come home.
You don't want Mom wander out in the wintertime or turn on the oven or forget to lock the door. It's just not feasible, you have to protect them and think of their safety first and foremost.
If your mother is close to the end I "think" hospice will provide around the clock care. I heard of this a lady in NYC. She wanted to return home--I think though you have to be on Medicaid. You would have to find out about this. I would speak to a social worker, elder attorney and primary care doctor.
There is help out there for you. This forum is great for people to share resources and you can decide what is the best situation for your loved one.
Meet with a social worker, elder attorney and primary care doc for an assessment. The doc at the rehab will have a say too
In Patient Hospice will provide round the clock care but while Medicare, Medicaid, Insurance will cover the cost of Hospice it will not cover the In Patient portion so you would pay for that out of pocket. That would be the room, bed, food just as you would pay for an AL, IL, or MC facility.
2. You may have to get doctor help to get court approved guardianship status for your Mom so you make decisions when she is cognitively impaired.
3. If she has a driver's license and access to a credit card to discharge herself, get a ride home and drive or rent a car, you could have a bigger issue.
OR 4. she could rack up big shopping bills if mentally she isn't her better self.
Yes, always error toward safety and you can't end up with a criminal charge for elder abandonment or neglect.
5. Medicaid for home care has in home support services. It covers about 100 hours/ mo.
That is why you would have to find and hire outside help for remaining shifts 24/7. Going rate for experienced quality care average is $28/ hr on up.
With cognitive impairment she can wander and get lost. She may need to be locked in residence.
There is a national shortage of locked facilities assisted living. Start searching now and get her waitlisted.
With guardianship status you can choose an assisted living for a temp stay or long term permanent. Do look at several. Contact licensing and go review the "fines file." How many. how often and for what? Some are nuisance fines, like a paper was filed a day late. Forgive that. Look for notable safety issues.
You are in role reversal now. It is your turn to be the parent. If you have her move in with you, it may be difficult to later say "no, it is time to go to assisted living. I can't give up my career responsibilities to help you or I won't have my retirement for myself and my family. The impact on my marriage/ relationship or children would be too heavy. Instead of being the loving adult kid you spend quality time with, I would be the one frustrating you often in order to protect you. You will be happier in assisted living."
Assisted Livings accept Social Security and SSI, not Medicaid. Skilled Nursing, Nursing Homes and Hospice take Medicaid.
As for Medicaid asset limit... if Social Security is paid direct to assisted living, her income assets will be lower and she should qualify. What counts is what hits her bank account. OR set up a Miller's Trust aka Special Needs Trust and Trust account accepts all income, then pays her a small amount monthly for incidentals after assisted living is paid.
Try to avoid nursing homes. Most are not good. Usually are depressing places.
Board and Cares can be okay, but your mom will likely be kept more active at assisted living. Most have physical therapy and / or a gym. Some have pools.
Memory care will cost $5000-7000/ mo as of Aug 2022. Avoid consigning to pay financial commitments. Sign as Power of Atty or Guardian and write that after your name once you have that status. You don't want your own assets at risk of lien.
The Trust can also sign as it has same rights as a person. Then any authorized board member(s) - whatever the Bylaws say - can sign as the financial party.
See an eldercare lawyer for Legal Advice. I am not a lawyer. I consult on eldercare legislation.
If you send your mom home, she can easily fall multiple times and not call for help. Seniors often have medical alert buttons but won't use them because they are afraid it costs more money or they don't want to incur an ambulance cost or bother anyone.
Trust the doctor. Not interns. Interns can make dumb mistakes... like trying to release my 93 year old father from hospital, who was high on pain killers, and weak, to drive himself home from hospital- Friday night rush hour traffic - to make an hour freeway drive.
I called at the "right time " in the middle of this, ( I was west coast, he was eastern US), found out was happening. Reached Physical Therapy Director who said he hadn't released him! He would stop this immediately- and did - while I was on phone hearing him chew out the intern.
He did go home Saturday. Had many falls. Died next week.
She is home now with family and sitters. Home PT, OT is much more effective. Most seniors rebound in their own homes as long as they have monitoring and care even temporarily. Often it does takes weeks to get back to their pre rehab routine.
If the answer to that is no then you have 2 options.
She remains where she is until she it is determined she is safely able to be at home alone. OR She will be safe with caregivers coming into the home. (For how many hours would have to be determined)
"Mild cognitive disorders" rarely remain static, there is always a decline. So looking into Memory Care or if necessary Skilled Nursing is probably something that should be done. It might be worth discussing with a Social Worker.
Follow the physician and facility recommendation for her care. It is natural for patients to " want to go home" and, often put family on a
" guilt trip" when they visit. Her safety is the priority. When you visit her, gently redirect the conversation to something positive when she starts to complain. If necessary tell her you are following medical direction for her safety and, then redirect the conversation. If she persists kindly express your love and tell her that you will see her again soon and, leave. Stay in communication with the physician, facility and interdisciplinary care team to make decisions. Are you the designated PCG or POA ?
Practice good self care; pray and or meditate. Involve her and/ or your faith leaders if you have them . If not, consider a facility Chaplain for support. Peace. JNM
They have to justify it to keep her longer. Is she continuing to make progress with rehab?
"My sister and I are caring for our Aunt and Mother who are both in their mid 80's and still live in their homes. My sister and I both work. Our Aunt and Mother live about 45 minutes away from us."
So what kind of caregiving and how much of it do your and your sister do? And you are doing this for your mother AND aunt? How long did you think you could keep this up, and what are/were the plans for when it became too much? (Seems like you are already there with your mother now.)
Get with an Elder Care lawyer licensed in your state to work through this before making any concrete decisions. Hopefully you have a durable power of attorney so you can handle your mom's financial issues and spend her funds as needed for "HER care" and to spend down if needed. Ditto for an Advanced Directive to make medical decisions if needed or to serve as her "medical agent."
Her care team should really be given time to do a full assessment, physical and cognitive/mental status and determine her real condition and IF it is safe for her to be home. Can she live independently -- handle all activities of daily living/ADLs like toileting, bathing, dressing, managing her Rx w/out any help and feed herself and IADLs (instrumental activities of daily living -- driving, shopping for food, cooking, cleaning, doing laundry, making competent medical and financial decisions, etc)? If not, what level of help does she need: aid twice a week to help with bathing OR she can do it all on her one safely all the time?
BUT DO NOT discharge her against doctor's orders. If you do that, the insurance coverage for what has been provided thus far may be denied!
This happened to a cousin of mine. He broke his back, had surgery and was discharged from the hospital to a "rehab facility" post op because he was in no shape to go home and they wanted to teach him how to put on and take off his back brace (to be worn 24/7 for 8 weeks). How to move (no bending/twisting/lifting) etc. To do PT with him and to handle IV post op antibiotics and pain meds (back surgery is very painful). NOPE, cousin hated the rehab facility and 24 hours later called his father to come get him (cousin is 50, uncle is 81), probably the post op IV pain meds gave him the feeling he was OK. And his dumb father agreed to drive him hom. Cousin discharged himself against doctor's orders and went home with his dad. 2 days later, uncle had to call 911 as they had no hospital bed at home and no appropriate pain meds much less antibiotics. So while trying to sleep in a recliner (dumb, beyond dumb) the stitches broke open and he was in agony. 911 took cousin back to the hospital and a 2nd surgery had to happen as he was NOT wearing the required back brace had not been fitted yet for his (each is specially fitted based on size). And the wound was all infected too as there were no IV antibiotics "at home." TOTAL HOT MESS
INSURANCE said NOT covering as you discharged yourself against doctor's orders! You can imagine the bill....