An Unexpected Homecoming

It’s been a long week. Last Saturday, Ray’s sister was visiting when he had a bout of “seizure like activity.” On Monday, just as I was getting ready to leave the rehab hospital to go pick up the kids, I noticed that Ray’s breathing was labored. One thing led to another, and it turned into another “seizure-like” episode. Next thing you know, we’re back at St. Vincent’s hospital for testing.

An echocardiogram, CT scan, EEG, and MRI later, we were all set to leave St. V’s Friday afternoon.

However, we could not return to the same acute rehab hospital we had come to know and love. The average stay there is 14 days. Ray had been there for 49, and the insurance wasn’t ready to pay for more. Tuesday had been set as his discharge day.

I had prayerfully considered bringing Ray home, but the doctors and family and friends strongly discouraged it. He is very impulsive, extremely shaky on his feet, and recognizes neither. He should use a walker or wheelchair, and needs a spotter, even with the walker. But he doesn’t remember that and, without a second thought, will hop out of bed, a chair, or even a wheelchair and eagerly want to help me, grab an imagined item, or go to the bathroom. How could a mother with five young children, including a baby, handle that? The answer is… she probably can’t. Plus, at a subacute rehab, he would receive two hours a day of therapy, whereas if he were at home he would only get three hours a couple days a week.

I toured three subacute facilities, and said I would cut off my right arm before putting him in two of them. However, there was a third that I was very comfortable with. Unfortunately, there was a mix-up and miscommunication, and that facility denied him admission. We were expecting to get that figured out early next week, so we decided to put him in one of the other cut-off-my-arm-subacutes in the meantime.

On the way to his new "home away from home"
On the way to his new “home away from home”

I figured he’d survive a few days in a poorly decorated geriatric facility, and then we’d get him to the better option.

We left the hospital around 4:30, and finally got to the new facility at five. After waiting 20 minutes for someone to bring a wheelchair, we were finally shown to his room. Walking through the halls, I was reminded of why I wanted to cut off an arm before sending him there, and when we walked into the vintage eighties room, boasting two beds with nasty, mismatched comforters and not much else, I wanted to cry. It was only for a few days, though, so I thought we could handle it.

But then I noticed that the bed had no rails. And the tech informed me that none of their beds had rails – that’s considered a restraint, and they can’t have restraints. So I asked about a bed alarm. And he said that, no, they didn’t have those, either. That was considered a restraint too.

And I said, “He can’t stay here.”

Which left only one option. Bring him home.

Thus, last night, with no planning and zero preparation, I finally brought Ray home, after

Home at last
Home at last

over two months of hospitalization. My full time job has now switched from hospital visitor, rehab supporter, and medical advocate. I am now 24/7 caregiver, not just to five kids, but to one adult man as well. Fortunately, I had been trained in walking with him, helping him to the bathroom, and transitioning from wheelchair to car. Unfortunately, we left the hospital with no training on his medications, no medical equipment, and a house that needs rearranged to fit our new needs.

It’s gonna be an interesting few days, but it’s good to have him home.

14 thoughts on “An Unexpected Homecoming”

  1. Wow! If there’s any way I can help, don’t hesitate to call! Remember that I’m in your area at least once a week, and I don’t mind driving besides that!

  2. Stephanie, Check to see if your insurance will provide for Home Nursing care while is at home. A nurse can do the medications and also show you how to do them. A nurse’s aide can help with the hands care for Ray while you tend the kids or get some rest. Also, consider adult day care facilities for Ray. Some are excellent and provide family members the needed break and peace of mind. Some may even offer limited therapy. Transportation to and from may also be available. I worked in the field for 34 years. I have four children who are special needs and took care of my mom and wife’s mother as they lost their abilities. Not saying Ray will not get stronger and come home fully recovered – that is my prayer. But until then you need help and it is out there if you look for it. God Bless you all!

  3. The railing law is ridiculous…again, lacking in common sense. We experienced it with my mother-in-law, who was at great risk for falling out of bed. My husband, a lawyer, told them that he would be holding them responsible. Guess what? They found some bed rails..they were a soft kind, and put a note on her chart that it was a family request. They also put a thick mat/cushion thing next to her bed on the floor and they lowered the bed near the floor. Still, it doesn’t sound like the facility you looked at was a good choice. They are so depressing. Praying for your family.

    1. It is the LAW about bed side railings. One can have them put on a facility bed, but must have a script from the facility physician. My mother was killed in a facility by bedside railings. No physician note so they were ileagley placed on her bed. She was found tangled in the bars. So it is a State Regulation, the facility did the right thing for your loved one. City wasn’t because your husband is a lawyer, it’s the law.!!

      1. Bridget, I am so sorry to hear about your mom. It helps to understand these laws that seem so ridiculous, when you hear a story like that. Bottom line is, those facilities clearly aren’t paying much attention to their patients, or something like that never would have happened. Unfortunately, because they’re not paying much attention, people like Ray need the safety devices even more. It’s a two-edged sword!

  4. You can call or text me anytime if you have medical questions. Can’t promise I’ll have the answer, but I’ll certainly try to help as much.

  5. Visiting nurse hospice helped get equipment for my dad. They are not just for end of life care. Beds,walkers, bedside camode. .. Etc. They help with meds too. I know you feel like calling one more agency is just exhausting but I wish I would’ve called sooner for there help. God bless you and your family.

  6. My name is Bridget and I work in Home Care and am willing to help you through this maze. Vi got into this business after caring for my parents and realizing it really is a MAZE. Your husband should be Intitled to home care which will help in many ways. I would be glad to help you with any health care question u may need. Always go to Medicare.gov to review nursing facilities. If u can get things figured out with the facility that denied you, he can still move there within 30 days of his release from St. Vincent.
    (edited to remove personal information)

    1. Thank you, Bridget. So far, we’re managing pretty well. My understanding is that we can’t have home health care come in if he’s doing outpatient therapies, and I want him to have the outpatient therapies since he can receive more sessions that if we did in-home. I have hired a girl we met at RHI to come help out a few days and having her here has been FABULOUS, to say the least.

  7. Goodness, I’m imagining the rehab place – I’m afraid I know which one it may be. My cousin had a traumatic brain injury and required months or care afterward. Methodist was great in the beginning. The first rehab here lasted a while, but they she ended up going to a wonderful place in Michigan. That may not be an option for you and your family, but please email me if you would like the name of it. Once she was out of the long-term care and rehab places, it was more difficult finding ways to get insurance to help with and to find outpatient therapy programs around Indy, but if our family can share any info with you on what they found we will. Will be praying for you all.

    1. Thanks, Amy! I sent you an email. I’d love to hear about your cousin’s experience in MI, if it’s the same facility we’re considering!

  8. I also had the displeasure of dealing with more than our share of rehab facilities in Indy, and again, up here in Noble County. I dont know about his insurance, but we have a wonderful facility here in this tiny town where we live. When we first had mom transferred up here, due to crazy rules, acceptance issues, misunderstandings, etc..we had to make a last minute decision to place her in a facility in Kendallville..it is owned and run under the name, Lutheran Life Village. While some of the staff were caring, etc..Overall, I would grade it a D-..she will never be there again! This past year, after two hospital stays from march to may, she again had to go to rehab before I could bring her home. This time, we were able to get her into Provena Sacred Heart..what a difference! It was amazing. The first place she was in, it took 8 weeks just to get her up and walking again. The second place, she was there less than two weeks, and came home better than she was when she left. If you want, let me know, and I will gladly send you any information that you need. There is also a wonderful place in North Carolina for tbi, but that is so far away..take care honey..always thinking of you.

    1. Thank you, Michelle. We are doing better than I’d expected, having him home. A standard rehab hospital isn’t really necessary anymore, though I do still feel confident that he would benefit from the intensive therapy of a neurological facility. Thank you for your support!

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