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He is alert, but unable to walk. He's on Medicaid. We live in Fl and have signed up With a statewide Medicaid managed care program, called sunshinehealth. They are telling me that they will provide a lot of help if I take him out of the home and bring him home to live. Have you any experience with them, I would like to take them home, but certainly don't want to ever have to bring back. Can I trust Sunshie Health and their promises or offers..

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Yes, it would save A LOT of state and federal money. It sounds too good to be true because it sounds perfectly logical and we don't often expect perfectly logical solutions to be offered by government agencies.

Many states have been offering programs to divert elderly from needing Nursing Home care -- the most expensive level of care -- for years. Others are getting on the bandwagon and trying more creative and cost-effective ways to address the needs of an aging population. Sounds like that is what Florida is trying to do.

Whenever politics are involved it is hard to know what you can count on long term. What if the Affordable Care Act is repealed. What happens after the next election in your state? But a good program, with high usage, would be pretty hard to scrap altogether.

You need to try to think back very thoroughly to the time when you decided you needed to place your husband. Would a hospital bed have helped a lot? Would having someone come in the morning and the evening to handle the going to bed/getting up routines? If you hadn't had to haul your husband to the clinic but a doctor came to you, would that have helped a lot?

Hubby can't walk. Would having someone help with the transfer to and from the wheelchair morning and night make that manageable? What about bathroom trips? Is he incontinent? How would you handle that if he were home.

Can you spend an entire day with him in the nursing home, and observe all the assistance he gets from aides now? Could you do all those things? Do you want to? Does your husband sleep well through the night?

For most of the people in my caregivers support group, having to place a spouse in a care center was absolutely heartbreaking. If there was any way they could have gotten enough support to keep the loved one at home, they would have -- and many tried it for months past the point where it was safe. There are some situations, especially with dementia, where keeping a loved one in a private home without three shifts of help available is simply not feasible or safe.

If you think this through as carefully as you can and decide that you want to try to have husband at home with more support for you and that you can do it safely, then I wish you full success!
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1waples, lot of excellent advice being given by other posters above. Another thing you need to think about, your hubby won't be getting better with time and with being home, sadly his decline will only get worse.

And what happens if after a few months you realize moving him home was a mistake... how would your husband feel being placed back into a nursing home, probably not the same one as that bed would be reassigned to someone else. He would lose out on all the friends he had made at the previous nursing home. He would have to learn a whole new staff, and the place may not be as nice as where he was before. I would think twice about moving him back home.
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here's my suggestion, can you go and spend next weekend at the NH with your spouse? Like you get there mid afternoon on Friday and stay till Monday morning. You may need to sleep in the chair or perhaps the facility has a overnight guest room? that you could use - my aunt's NH had a unit for family sleepovers. So you take that weekend to see what it's like to be his caregiver 24/7. Now it's not going to be realistic as you have dietary cooking for you and nursing staff bringing in his medications, etc. But you take the tray and set it up on the table and feed him; you change his undergarments and help with all bathroom runs; you give him his medications (you may need to work with nursing staff on this as they may need to stand there while you do this to ensure delivery); you get him dressed for bed and then in the morning you get him changed for the day and transfer him to his wheelchair or whatever; you do all the hygiene for him too, etc. etc. then the following Monday have a reality check on what it was like……Then on Wed or Thursday take a hard evaluation on how your health & strength is doing.

Now what if you need extra hours? Just what is Sunshinnny going to charge you? I bet they have a whole additional fee structure that they can provide. And it is going to be all private pay, I'd bet.

Get the name of the MD too. Then google it to see if: he is the medical director for a NH or a couple of NH; or perhaps the medical director of a hospice or a couple of hospices. If he is, then the level of care your spouse is going to get will be just cursory. I bet they will do the "go to the ER" for anything serious and either you have to get him into the car or you call for ambulance (which Medicare may or may not pay for). Ask to get a copy of the contract in advance too and have a couple of others read it. If in the contract it does not list the MD by name, tell them you are going to place his name and state ID # in the contract. See what kind of blowback you get for that.

Other states are doing this. There was a long article in the New York Times on a daughter and her dad on this very subject in November. What happens often it that the agency starts all rosy. But for clients who need a lot of care, who really need nursing services rather than drug dispensing & hygiene care, well those are just to expensive for the agency to have around. They will discharge him from their plan. You need to look at the contract to see what is their ability to do this.
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Having a bedridden person at home requires 24/7 care. Read all the above comments. When mom was bedridden, there was only me and dad. I have a full time job. Dad did the major caregiving. I took over when I got home. My weekends were at home to relieve dad. I no went to my religious Sunday gatherings, no more lunching out with friends and family, nor dinner out. My dad was exhausted and I needed to be home to relieve him. We changed mom's pamper 3 times a day, changed her clothes and bedding at the same time..because she would sweat. Clean clothing and daily cleaning of her body helped prevent bedsores all those 13 years bedridden. Even with the 2of us, we were so exhausted. Shopping for house supplies? That was done during my lunch hour and after work.

Please think very carefully on this. FYI, my dad finally had a stroke. And he's now bedridden. I'm starting all over again with him. I see another 10 years of this.
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Would you be able to fill in the times between morning and night? Would the bedtime ritual come at your convenience or theirs? Nighttime is probably the worst for some elders, what with Sundowning and other stuff. During the day you would be the sole caregiver. Can you handle that? I would assume that any additional help during the day would be an additional cost. And $1500 sounds like a lot of money, but it depends on what needs to be done to the house. Any additional renovations would be your responsibility. Since he's unable to walk, would you be able to lift him, change his briefs, take him with you to run errands?

I know it sounds very tempting, but I personally would think long and hard. Especially if your husband is happy or at least content where he's at. Tough decision for you, good luck.
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I may be wrong about this, but in my experience caring for a bedbound person is quite different from caring for one that can use a wheelchair but not walk.

My son is currently wheelchair bound, due to an accident. At first when he got out of rehab center we kept someone with him around the clock. When he got good at transferring to the wheelchair and back into bed, when there was a ramp in place and he had practiced getting out of the house on his own, we all relaxed some and now he spends the time while his wife is at work on his own in the house.

1waples, after your husband is up and dressed and in his chair, would it be safe to leave him alone for short periods, so you could run errands, maybe even meet a friend for coffee once in a while? Will Sunshine provide a life-alert system, and would that be useful? How about a ramp? How would you get hubby out in an emergency?

How old are you both? How is your health? Are you sad that your husband is not home with you, or is it kind of a relief to be able to visit him where others take care of him?

As for the what-ifs, I'm not so sure I'd let that drive the decision. What if it doesn't work out and he has to go back? Then he has to go back. He is mentally cogent now -- what if he develops dementia? Then he will need a different kind of care that you may or may not be able to provide at home. What if you don't try this? Will you always have a regret that it might have worked well? None of us know what the future holds. Consider the possibilities, but focus mostly on the present as you make your decision.
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I don't know anything about that organization. Hope someone does.

But ... Why did you need to place your husband in the first place? I know that is not a step you took lightly. What specifically will Sunshinehealth do to solve those particular issues?
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waples, ask to speak to a supervisor at sunshine health and tell them that if they suggest this ridiculous plan again, you will report them to the state health department for abuse and harassment. You are no Spring chicken, but it sounds like they are a bunch of clucks.
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Lots of good comments here.

I would like to point out, emphatically if I may, that caring for a spouse is a whole different ballgame entirely than caring for a parent. And the factors that go into deciding on the level of care one is able/willing to provide are quite different in the two situations.

There is still a limit to what one can safely and reasonably do, no matter who one is caring for. But I think our perception of the limits and of what we are willing to do can be quite different when it is a spouse we are considering. I cared for my husband at home for 10 years. What I was willing to do to keep him with me would simply not have been the same if we were talking about a parent.

1waples, do consider the limits of your own strength and patience and stamina. Do consider the safety issues here. But also give yourself permission to factor in the love and commitment you have to your husband. That has to be part of the decision as well.
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Countrymouse, these programs are intended for persons who have a potential caregiver who can handle the situation with sufficient help. They really are not set up for persons living alone in most cases. It is clearly acknowledged that for 24/7 care, a care center, even the most expensive level, is less expensive than providing round-the-clock care in a home. So if there is not a spouse, child, grandchild, sister -- someone -- in the home to pick up the slack, the program isn't applicable.

So it really isn't fair to judge them by how they would cover 24 hours. That is not what they are offering. If something took the at-home caregiver out of the picture, the disabled person would be transferred to a care center, not provided 24-hour care in the home.

This program is NOT about leaving a loved one entirely in the hands of a managed care provider. It is about accepting help so that someone can provide caregiving services in a home.
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