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He still cannot stand or move without 2 assists. We are both 70 years old. I cannot lift him. His cognition also took a serious hit. Hate being by myself and visit every day, yet he's angry, confused and keeps insisting he can walk and perform tasks at home. He can't. Current rehab wants to discharge him and I have no idea what to do to ensure he's safely cared for and continues to receive physical/occupational therapy. Few long term care facilities offer what he needs, but the pressure is on to move him asap. We have no children nor family nearby. Am so stressed out, could really use some advice. Why is it so difficult to find long-term care for a stroke victim? Thank you in advance for ANY thoughts.

Realize that those 100 days are not guaranteed if Medicare is paying. If Medicare feels he is not progressing, they will have him discharged. He will either need to go home or into a facility if home is not an option. If you ended up placing him, please see an elder lawyer to have your assets split. His split will go towards his care and when almost gone you can file for Medicaid. Once he is on Medicaid you become the Community spouse.
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Reply to JoAnn29
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Update. Now the heat is ON to move him, although insurance has yet to deny. He's currently in a sub-acute rehab after 4 weeks in acute. Very little progress. Yet staff keeps dropping hints (when he's within earshot) of which facility he'll be sent to. Cruel. That just agitates him further. I've offered to private pay when insurance does deny, but they want him OUT. Returning home even with 24/7 care not an option. His brothers who visit occasionally pressuring me to bring him home. They don't see or hear what I do. So they are in denial also.

I do have applications in to SNF's but that existence will destroy what little spirit he has left. Technically, he still has about 40 days left of the 100-day window provided insurance approves the weekly benefits requests. His case manager has been no help at all.

Why on earth won't these places accept private pay? Just trying to buy some time until I can find the right facility for him. Thank you for any guidance you can provide.
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Karsten Aug 8, 2024
sometimes I feel like these case managers/social workers at rehabs are advocating more for the insurance company than the patient.

My mom is at rehab and OT, PT, nurses have been great but social worker almost seems to be an employee of insurance company . I guess they are in the middle, but dont seem to work at buying just a little time. I realize I dont know the whole story but you saying case manager has been no help sort of resonated with me.
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It should not be difficult to find long term care for a stroke victim unless you live in the middle of nowhere.

He goes straight from the rehab to the nursing home, permanently. Do not pass go, do not collect $200.
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Reply to ZippyZee
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I'm so sorry that you hate being by yourself. However, your husband is "angry and confused" so wouldn't be company for you at the present time. The person you look after is a responsibility, no matter how much you love them, and you would need to find company elsewhere.
Your husband might recover and become like his old self, or he might develop vascular dementia and need memory care. It's too early to tell.
Rehabilitation is key. My mum didn't get it. Her husband took over her care and did every little thing for her and wouldn't let her learn things anew. So, she became totally dependent and didn't have to think much. Dementia soon followed.
My mum had her stroke in 2011 when she was just 63. I felt as if I'd lost her then, although I still occasionally see flashes of who she once was.
Your husband can't be discharged to you because you cannot look after him. But there might not be anything more that they can do in terms of rehabilitation if his situation has plateaued. You need to speak with his doctors and ask what else can be done for his care. It does sound as if he might need some kind of nursing home for his current condition.

You need to look after you. You need to rebuild your life, find friends, meet up with other people. You need more companionship than your husband is capable of giving. You may need to reduce your visits to every other day, at first, so that your life doesn't revolve around your husband. You matter just as much.
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LoopyLoo Jul 18, 2024
Very well said.
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No, it is not realistic. Massive stroke means a lot of damage. Your husband is 70. (I am 74) He will not bounce back like a man much younger. Sometimes it takes months of therapy and reteaching the brain. If you cannot care for him it means Skilled nursing for him. See an Elder Lawyer about protecting you 50% of the assets.
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Reply to JoAnn29
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He is probably running out of insurance for rehab. He is most likely at his highest level of functioning now. If you can not help with his care, he will need a plan to meet his needs - either at home or in a long-term facility. Talk to the case manager about how home health can be achieved at home - who pays for his round-the-clock caregiver and what devices will be covered by insurance. Also, ask about long-term care facility options that he qualifies for. May need to look at places that are further away.
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Reply to Taarna
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I'm so sorry you are feeling stressed over this.
He needs to be transitioned to a skilled nursing facility.
You can tour a couple and ask if they have an available bed before making a decision, then the doctor will make the referral to send him there.

It is normal for him to be frustrated and want to come home. Everybody does.
If you can not take care of him, it is unsafe for him to come home!
Some skilled nursing facilities will offer some form of physical therapy, though it will not be as effective as the rehab. Start now, look up nursing homes in your area and call them and set up a meeting and tour with the admissions director.
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Reply to CaringWifeAZ
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I am sorry about your husband. He is in special need of 24 hour custodial care. He would be better off staying in a personal care home. Unfortunately, he is not going to get better enough to live at home. Seek advice from an Elder Care Attorney.
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Reply to Onlychild2024
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KLS1953: Inform the discharge planner that it would be an unsafe discharge to home. He may require residence in an SNF.
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Reply to Llamalover47
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First - deep compassion for your situation. Sending you strength and healing.

Echoing what others have said - speak to the case manager and tell them it is not safe at home, you are not equipped to care for your husband. This is nothing to feel ashamed of nor a judgement of your love or capabilities - case managers need to hear clear words in order to take action.

Request the case managers help to find an appropriate skilled nursing/appropriate place for him to transfer to. Agree with others in that the goal should be to transfer from the rehab to the next facility vs going home first. At the rehab there are people whose jobs are to find placement for their patients and ensure they are being discharged to a safe environment. If you bring your husband home first you will be scrambling to care for him PLUS try to find a place for him. It is not easy to get the facility people on the phone etc. The value in rehabs/hospitals/case managers are (should be) they typically have exisiting relationships in the community for different skilled nursing/long term care etc.

Feeling pressured to agree to discharge is AWFUL. Please try to kindly and respectfully push back against that pressure. Let them know you need help and time. If the case manager isn't helpful try to see if there is a social worker or request to speak with the doctor... appeal to someone on the healthcare team who will listen and offer insight into whom to speak with..insight into whom at the facility is helpful, willing to help explain options etc.

Not sure what level of rehab your husband is in. Sub-acute? Acute? Spend time with the rehab PT and OT and understand what kind of progress he is making. See if the PT / OT can offer insight into what else your husband can benefit from or what else they can do there to help him qualify to extend his stay. For example can he stay there until he is able to stand or take small steps with assist? What metrics or what would it take or who needs to authorize an extension in his stay? Is an acute rehab (more intense rehab) a possibility? My understanding is the first 3-6mo are very important in terms to making physical progress after a stroke. Frequency and repetition of movements is crucial to making progress which I imagine is best done in a place where your husband can receive PT/OT daily.

For context I've been navigating my 81 year old father's medical care for the past 3 years after a severe hemorrhagic stroke. I knew nothing about how to navigate the medical maze. I also felt pressured to discharge etc at various points and was given helpful advice by knowledgable nurses/doctors/case workers to learn to not just accept everything I was told at face value. Had to learn to ask for options and for help. It sounds like you are visiting daily so the team knows how much you care.

For a reality check - in regards to caring for someone at home after a stroke based on the brief description you shared, there are a lot of posts on difficulties of being a caregiver. It is heartbreaking all around. Home health insurance paid PT/OT etc are just brief visits and their goals (at least from our experience) is to provide basic exercises for the patient and caregivers to do on their own. At home PT/OT didn't seem to be able to help do the kind of work you do in a rehab facility. The days and nights at home are VERY long and draining when caring for someone who needs help with toileting, mobility, eating, living... not to mention all of the behavior management with the cognitive changes and your own personal feelings of grief.

Stay strong and try to take care of yourself as well especially while your husband is being taken care of at rehab.
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Reply to meshell33
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The best way to get a LTC bed is to transfer straight from rehab into LTC. Many facilities offer both.

The SNF where my mother was placed had both and to be honest, the rehab aspect of the facility fed the LTC beds. In fact, it was very difficult to even get into the facility because the LTC beds weren’t available due to rehab feeding LTC.

So - if you take him home, which sounds like a potentially unsafe discharge, be aware that it may be extremely difficult to subsequently get him placed.

You should consult with an elder care attorney with Medicaid expertise to help plan this out. With my mom, she entered LTC under private pay. Once in there, the attorney worked with my father to apply for Medicaid, for which she was accepted. We paid 2 mos out of pocket.

You need to play chess, not checkers, and you would be remiss not to get the best advice possible from an elder care attorney. Wishing you luck.
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Reply to Kristen2037
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Hothouseflower Jul 14, 2024
Yes, we did exactly this. We informed the rehab that no one was able to take care of my father and we asked for him to be placed in their SNF. Eventually a bed came available and he was transferred to another floor.

We saw an eldercare attorney and had my father in the NH as Medicaid pending. It took about three months for his application to be approved.
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Medicare pays for Rn, Pt, Ot visits. U may have to look into homecare agencies . Don't hurt yourself because he would be placed in that incident. Look into hospice also. They send an aide up to 7 days weekly and paid for by medicare. Talk with social worker before leaving the hospital. Good Luck
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Reply to Cruiseforever
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Can you get him into a care facility soon. There are also 6 bed board and care that should take him. Most are expensive. What about medicad? You need to talk to the Human Resources dept. at your hospital. They usually have a list of places that should take him.
good luck
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Reply to Funcountess
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What You Can do is contact His primary care Physician and have them order PT / OT - 4 times a week and get a CNA In there That should also be covered By Medicare . The CNA Does bathing and Light House Keeping . You May try and find caregivers to come In Part time or full time ( Care.Com ) , Next Door .com - ask Neighbors for help , find a walking Companion . 70 is Young - He could get His Mobility and Cognition back . My Dad got His cognition back after a couple Months . A VNA Nurse can come in . Ask your Primary Physician to Hook you up with a social worker to help you Navigate elder services and get some senior Home care coming In . Get Meals on Wheels Too .
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Reply to KNance72
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the social worker there should help you!! do not take him home. it will be hard to get him back in. or call your county dept of senior services.
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Reply to lovelyliz
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This is 'crystal ball' question.

Ask your / his MD.
If there is a 'stroke' Association available, call them.
I believe there is 'no' right or clear answer to your question.
Everyone is different.

The question here may also include your fears.
As you say you have 'no idea what to do to ensure he's safely cared for ..."

Find an ind medical social worker to assist you.
Get emotional support for yourself (through neighbors, friends, church)
It is good that you are reaching out here for support / advice.

You also need to protect yourself emotionally from his anger at what's happened to him being directed at you (which is normal "we hurt the one we love" - or who is closest to us / feels safest to us to dump on. When he does this, say:

I understand how you feel.
I am doing all I can for you and will continue to
It is not okay to direct your anger towards me (it may or may not help to tell him, although it is important that you set your boundaries and see how it goes).
When he starts in ... don't stand there and take it. Walk out of the room, even for a few seconds ... get a glass of water ... shift out of the mind-set or how his words trigger/affect you.

You need to take care of yourself equally to how you take care of him. ... and to be available to help him, you need to take care of yourself, first.

Gena / Touch Matters
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Social Worker hasn't started Medicaid application, just in case?
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Reply to cover9339
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You need to talk to the discharge planner and tell them that you can not care for him at home and you need assistance in locating a facility that will take him.
They should have a list of facilities and then you need to tour each one that is in the area where you want him to remain.
From what you are describing he needs Skilled Nursing. That should be covered through insurance Medicare/Medicaid
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Reply to Grandma1954
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There are very few LTC facilities that offer more than minimal rehabilitation. You may have to chose between placing him near home and getting him more rehabilitation. Your worst choice may be to bring him home. That will require hiring home health aides, and can be both expensive and exhausting for you.

Please have his doctors titrate medication to calm him. It won't change the situation but it may make him calmer and more cooperative.

You can also look into facilities that will let you both move in and provide additional services for him. Many have onsite rehabilitation services (if he qualifies). This would allow you to continue to live together and call for assistance as needed.

No matter what you decide, please don't put your own needs last. If you "crash and burn" he does too.
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Reply to DrBenshir
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This is a duplicate post. KLS we see all of your posts. You just placed them in different categories
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Reply to MACinCT
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I am afraid that his recovery has plateaued. It is common with discharge planners to leave open ended questions. Obviously you cannot care for him at home and private caregivers will cost more than a nursing home unless you have deep packets. It may be time to file for Medicaid for a SNF bed. His doctor can continue ue to order additional PT if it will do any good. Let the discharge planner know what you choose to do.
You mention that they are having trouble finding a proper facility. This is telling that even finding specialized caregivers at home is a challenge. Give them time to find a place. Meanwhile he should be receiving good care in rehab so rest assured for now.
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Reply to MACinCT
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I'm not sure why it would be so difficult to find LTC, unless you mean in your home? Medicaid pays for LTC in a facility (when he financially qualifies). Seems like he'd qualify medically for sure. Maybe consult with a Medicaid Planner for you home state, and an elder law or estate planning attorney so that you can make informed decisions about your futures.
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