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.
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.
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.
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
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.
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.
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.
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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