My father, age 76, has lived independently in a state that is an 8-9 hour drive away from me. 10-11 days ago, he had a hemorrhagic stroke. His live-in girlfriend was working out of town, 3.5 hrs away. He called a friend to take him to the ER. His girlfriend texted me and I drove down immediately. I have 3 siblings. We all live out of state and in different states, and I’m the closest. I am an 8 hour drive away. The hospital kept him in ICU for 4 days and sent him home with minimal instructions. When he was discharged, two of us went back home while one agreed to stay to keep an eye on things (he is the only one who can work remotely sometimes). The girlfriend was at the hospital the whole time. Then, He was home 7 days from the hospital, and she broke up with him because he said he wasn’t going to marry her. I have no idea why he said that. I don’t know if he was just being matter of fact and not thinking about how she would take it, if he was feeling suspicious (my sis and I have been suspicious of her motives), or if he’s developing dementia because I thought he really liked her. She was originally telling us that she was going to either quit her job and stay with him or take family medical leave. Now, if one of us doesn’t stay there, he will be unattended, and my brother is telling me that dad is requiring constant supervision. He’s bumping into walls, hitting his head, dropping things, etc. My brother needs to go back to his home state to work. We’ve all discussed the various options of moving him closer to at least one of us, but no one can provide around the clock care as we all have to work. Also, I’m the only one who lives in a mild climate and in a logical location. The others are living in pretty extremely cold climates with other challenging conditions. I am the only bread winner in my home, and I have a disabled husband and two adult children who work and are in college. I met a social worker once when he was in the hospital but I never got a business card or even a last name. I went looking for her when he was still in the hospital, but didn’t find her. I don’t know who to call. He is a Vietnam vet who has never once used his benefits. We are going to work on getting that ball rolling this week. He has SSI and Medicare. I assume he should qualify for disability, either permanent or temporary so maybe he could also get SSDI but that will depend on a doctor’s evaluation. I’m shocked that no one suggested therapy before he went home. We would love to get him an in home nurse but medicare won’t cover that and it’s too expensive. None of us have any extra money to help and his income is very limited as well. He is retired but was still working from home for extra money that he desperately needed to make ends meet. Now, we fear he will not be able to do that again for a long time or ever. I need to know who to call that can assist us with navigating this confusing world of services that may or may not be available to him.
This is just a follow up to my last post.
I am so sorry that your father was treated so poorly by the medical staff at the hospital where he was admitted. This is very unethical. What you mentioned about the blood pooling in your father’s brain and the hospital said they have to wait until the blood absorbs does not sound like the proper medical care for someone who has a brain bleed. You also mentioned that Medicare refused to send a home nurse to care for your father and this is also a surprise to me. I do not know the circumstance that prevented your father from getting the proper care, and perhaps this needs further investigation. When I had my brain bleed, I had doctors from every specialty running tests on me and Medicare paid for their services. The neurosurgeons also took good care of me. Medicare also paid for the therapists to come to my home to give me continued therapies after my discharge from rehab. I cannot fathom why Medicare refused to pay for a nurse or therapists to come to your father’s home to continue his care. I know for a fact that if your father has Medicare Advantage they will pay to have a home health aide come to your father’s home to help him with his ADLs.
With regard to Social Security disability, since your father has already reached retirement age and he is now receiving Social Security retirement benefits, I do not think he can get Social Security disability. I was on SSDI before my retirement, but once I reached retirement age Social Security converted my Social Security disability to Social Security retirement. You can call Social Security to see if your father can get both, which I doubt he will.
You mentioned that your father has limited income. Have you checked to see if he will qualify for Medicaid benefits? Perhaps it’s worth checking into this as this will help greatly if he qualifies for Medicaid especially with SNAP, etc. You should also check to see what VA benefits he is entitled to.
Praying that your father will get the medical and financial help that he deserves.
while he was in the hospital, it felt like he was being cared for very well. I had to leave before he was discharged. My siblings stayed.
They sent him home with the only restrictions being “assist with walking”. They didn’t even say that he couldn’t drive nor anything. They didn’t say don’t operate machinery. They didn’t mention cooking in the kitchen, shaving, none of that. it’s a miracle that my brother has watched him so closely because he was going to solder, he was going to operate his skill saw, he attempted to make some breakfast. None of these things are a good idea.
I'm glad you are following up with his doctor. I hope s/he recommends in-patient rehab and that Medicare covers it.
Your father should have gone to rehab immediately after his surgery, and the hospital is definitely at fault for not sending him to rehab. I am so sorry that your father did not get the proper aftercare immediately after his hospital stay. The hospital should be held liable for not following proper procedure when they discharged your father.
I Cannot believe they sent him home like this either but none of us were suspecting this when he was discharged. He seemed mostly fine in the hospital. Not 100%,though. I remember that he was wobbly once when he stood up. Nurses walked him gown the hallway and said he was good. I feel like that’s about the extent of their PT evaluation. I’m sure they did more but I missed it. We took turns visiting in the room. He was in ICU for 3-4 days but was downgraded quickly. They just didn’t relocate him due to rooms available.
This was an "unsafe discharge". I simply cannot imagine someone in ICU this long with a hemorrhagic stroke being sent home bumping along walls and without at LEAST 20 days minimally as provided by medicare for rehab. Your father should have been discharged to rehab. There should have been all KINDS of PT and rehab assessment, and work to get him back on his feet.
As I said, going now to find out benefits and get your Dad registered is one thing, but how this discharge happened I cannot imagine. I am a former RN and I tend by nature to "defend" medical personnel and hospitals. But this was an UNSAFE DISCHARGE and should be reported in full to JCAHO the Joint Commission on Accreditation of Hospitals. You will find their information online. I would contact Social Services in the Hospital for a meeting to let them know you are doing so. A hospital could have a big ding on licensure for something like this.
We just had a post concerning Social Security Disability after you start collecting. I think the OPs husband was under 65. Because he had only been collecting for about a year, he would be able to switch over but would really not get much more than he was already receiving. For him, it was the ability to get Medicare. Your Dad is 76. This stroke maybe considered a part of aging not a disability.
Since Dad started having problems when he got home, he may have had another stroke. His stroke may have effected his filter and thats why he told the girlfriend he wasn't marrying him. She was smart to leave because with you and sibings living so far away, she would have been the main caregiver. With all the responsibility and no legal standing.
Your siblings need to make the doctor who ordered the test aware that there is no one to care for Dad. That they r surprised that he was not sent to Rehab (he may have refused thinking GF would care for him) or at least homecare. (Again GF would be there) Paying for 24/7 care in the home is expensive. An Assisted Living or LTC maybe better.
Not a great option. What IS a good option is for Dad to get into rehab for a couple of weeks, paid by Medicare. Then you/he can reassess whether a return to home might be feasible.
Consider just taking him to the ER and telling them that he's had a mental status change since discharge. That should get some imaging done to see if there's been another stroke.
Source: https://www.disability-benefits-help.org/blog/maximum-age-to-apply#:~:text=The%20SSA%20does%20not%20set,specific%20impairments%20related%20to%20aging.
I think this means if he has dementia, he won't be eligible for benefits.
Also, if he needs 24/7 care he may be a candidate for LTC, which is covered by Medicaid (plus financial qualification). Ask his doctor whether he needs LTC. You can talk to a certified elder law attorney and/or Medicaid Planner for his state (or whatever state he is moved to).
I'm so sorry for this distressing trainwreck. May you gain wisdom and peace in your heart on this journey.
As Beatty says, this is a crisis and it's the hump to get over.
Call the hospital stroke coordinator today and explain the dire-ness of dad's situation. Even better if you and sis can call together. Explain the deficits dad is showing. Ask for the Social Worker to get involved in RE-planning for how this is going to get handled going forward.
Call the hospital discharge department; he may still be in the window where he can be admitted to rehab, covered by Medicare.
Call the local Area Agency on Aging. They can do a "needs assessment" to tell you what level of care is needed.
I had to drive back to my home state the next morning so my adult daughter could go back to work. (She rode down with me for moral support but does not have as much pto as me.) So, I left my brother and sister and the girlfriend in charge of being there when he was discharged. So I didn’t get a chance to listen or ask questions.
He was visited constantly by friends and family and his children while in the hospital and he was also feeding himself and playing the guitar from the hospital bed so I’m sure they assumed he would be looked after and that he was pretty functional compared to the others around him. It wasn’t until he got home that he began to bump his head and drop coffee etc. As soon as he got home, he hit his head on the door on his way into the house. I am not sure if his condition is same as when in hospital or worse.
I trusted that the discharge paperwork would have had more information than it does. Who knows if girlfriend had info that wasn’t shared with us. She was listed as his “wife” on his chart at the hospital and he gave her medical power of attorney.
I’ve been communicating with sibling who is currently in the house but basically, we have that stroke binder and not much else. I have business cards with contact info of three people who cared for him in the hospital: PA, Neurologist, and Stroke Program Coordinator. I wish I had contact info for the social worker.
He has a follow up CT Scan on Friday this week. No idea if that is also a follow up appointment or if this is just a come in get scanned and head back home appointment.
Also, in my state there are filial laws. In his, there are none. That does concern me.
While it's sad his relationship has broken down, the girlfriend could probably see the writting on the wall here. Dad is now a stroke survivor. Bringing big changes, including financially. (A girl's gotta eat & a man is not a financial plan). She cannot be both in paid work (if she was) plus be a 24/7 caregiver. By her leaving, this forces other solutions for him. I get that.
Does Dad have a regular Doctor? Did the Doctor get a discharge
letter from the hospital? You can ask for one to be faxed. Then book a longer timeframe appointment with the Doctor. Discuss his recent stroke, his recovery so far & how to get the help he now needs eg
- ongoing physiotherapy
- OT therapy/equipment
- functional assessment
- disability / pension
Basically, if Dad cannot look after himself now he will need to have services to his home or move into a care home of some sort. A functional assessment (done by OT or Social Worker) will highlight the level of assistance needed. Eg Can he manage personal care (bathe, dress)? Cook? Shop? Manage money, bills? Will pop in visits from aides for care at home be enough? Is this available? Affordable? Could Dad arrange the staff he needs? (This is a time consuming never-ending task, getting aides, getting replacements, dealing with no shows & cancellations. Very hard for working adult kids to take on).
Or does Dad now require 24/7 support, managed by others? If so, the Doctor may know of a good local option. No harm in asking.
I wish you well through this crises. For it is a crises. Just remember there are no are no wrong paths, just paths. Sometimes it takes a while to find the way.
About the girlfriend, she realized after 7 days that he was going to need a lot of care. If what he wanted was a free live-in nurse, why would she do that? She’d quit her job and he’d have no obligation to support her without marriage. She’d lose her salary. She wouldn’t be accumulating social security credits, might lose her health insurance if it’s employment related, and lose other employment perks like a social life. No inheritance rights. Etc.
No one should agree to be a nurse with a purse. She seems like a smart lady.