Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
I'm really sorry to hear about your husband's continuing disorientation. I was really hopeful that with some mild rehab he would bounce back after the fall.
Don't blame yourself regarding looking into the "most appropriate" SNFs. Almost all of us were initially fooled the first time our loved ones ended up in one. Thinking, like you, that the hospital would have the best information and send our loved ones to the best/most appropriate place.
We all learn (quickly!) that's not the case, and if we're not devoted to keeping on top of things, our loved ones can end up in totally unsuitable places that do nothing to help them improve.
I hope your husband can get into an appropriate place, and can regain some of his function so that you two can be together in your condo, for a while at least.
I hate to suggest that the SNF may lead to permanent institutionalization - because I know you are both still young-ish. However, as this seems to be dragging on, you may need to start doing research now on what it will take to get your husband qualified for medicaid and what that will mean for your living situation. If there's a chance that your husband won't recover to the point of being safe (for him, or for you) to come home - that means long term SNF/Nursing home bills ... and that would bankrupt most people.
Really hoping he recovers somewhat and you two are able to have some nice years together in your condo.
I'm really sorry to hear about your husband's continuing disorientation. I was really hopeful that with some mild rehab he would bounce back after the fall.
Don't blame yourself regarding looking into the "most appropriate" SNFs. Almost all of us were initially fooled the first time our loved ones ended up in one. Thinking, like you, that the hospital would have the best information and send our loved ones to the best/most appropriate place.
We all learn (quickly!) that's not the case, and if we're not devoted to keeping on top of things, our loved ones can end up in totally unsuitable places that do nothing to help them improve.
I hope your husband can get into an appropriate place, and can regain some of his function so that you two can be together in your condo, for a while at least.
I hate to suggest that the SNF may lead to permanent institutionalization - because I know you are both still young-ish. However, as this seems to be dragging on, you may need to start doing research now on what it will take to get your husband qualified for medicaid and what that will mean for your living situation. If there's a chance that your husband won't recover to the point of being safe (for him, or for you) to come home - that means long term SNF/Nursing home bills ... and that would bankrupt most people.
Really hoping he recovers somewhat and you two are able to have some nice years together in your condo.
Best thoughts for you!
Unfortunately, I agree with the latter suggestion, Germaine. I am not sure how either of you is coping right now. At least if he were placed, it would be a stable environment. You do need some lead time to qualify for Medicare, I believe.
I suspect that his docs aren't familiar with his set of impairments combined with the injury. It might be that they simply don't know what to do with him. Have you talked to his regular doctor about all of this? At least he or she would have background about his baseline situation.
I am as astonished as you that there are so few rehab facilities for people with head injuries.
Like Briolat, my best hope is that he plateaus enough that he can come home for a time, at least. I don't know if that is in the cards though. I want to wish you good luck in this. I think you are due some good luck by now.
(This is the update from yesterday).
The rehab place that focuses on traumatic head injuries will not accept him because he is "too disoriented" and he walked out of the SNF. BTW, they are a secure, locked facility.
I had a lengthy discussion with, yet another, doctor in charge of his case this morning. They will be trying to find a placement for him. There is another rehab center about an hours drive away that also focuses on neurological issues/traumatic brain injuries but they only have ten beds and also very strict criteria on who they will accept.
My husband has become increasing more disoriented these past two and a half weeks, that is when most of those changes have occurred, (going home, starting out-patient rehab, an ER visit & hospitalization, starting in a SNF, another ER visit and hospitalization).
Obviously, I should have checked out specialized rehab facilities before he became "too disoriented" but it really never occurred to me as the doctors wanted to release him home after the first three weeks in the hospital. I bet that he would have been fine if the doctors had not put him on that strong medication, just a day and half before they discharged him. The medicine caused him to sleep 16-18 hours a day and severely lowered his blood pressure which put him back in the hospital and really started his decline.
Update, Tuesday, October 13, 6 PM.
The other traumatic brain injury place (an hours drive away) would not accept him because he is not "injured" enough. Apparently they only take people who have TBI that involve a lot medical factors such as tract tubes, significant nursing & medical needs, etc.
I appreciate the support & concern of my caregiver friends on C-D. This whole situation is so overwhelming I just don't know what to do. I'm afraid that the hospital will just say that he is discharged to go home & I have to deal with any problems myself (even though the rehab center that specializes in traumatic brain injury wouldn't take him because he was "too disoriented").
I left a message for his regular doctor and she left a voice message that I should just follow the recommendations of the hospital doctors as they are familiar with his current medical needs.
Does anyone have any other suggestions or ideas?
Thanks.
PS. I am starting to do some checking on Medicaid, but it is pretty complicated. I also have a referral for an eldercare attorney.
Last edited by germaine2626; 10-13-2015 at 05:28 PM..
Does your state have a medicare ombudsman? Its the last ditch "threat" I would make here if I felt my loved one (who had medicare as primary insurance) wasn't actually getting the help they needed.
If your state does, you might be able to contact them and explain the situation..... no one knows what to do for your husband, SNFs won't take him because he is either too disabled, or not disabled enough, and you currently don't have the ability to provide sufficient hands-on care to get him the rehab he needs. You really should at least be able to get the full 100 in-patient "rehab" days he's entitled to, if he ends up needing that long (I know he's already used a few of those days during his times in the various SNFs).
if you can't get him placed for at least temporary rehabilitation, you're probably going to have to hire private care. Here, that averages about $12+ an hour (non agency) or $22+ an hour (agency). Unless he has a LTC policy that covers home care, you'll have to pay out of pocket (medicare does not cover any significant at-home benefit).
You could also look for a drop-in center, but probably one more for "disabled" folks, rather than "elderly" as I don't think age wise he's really particularly elderly.
Is there any sort of center for disabilities (differently abled, etc..) in your area? No idea what kind of environment you live in, but usually more services available in larger urban metropolitan areas, as opposed to rural, sparsely populated.
If so, they might know of some programs that might be available (at least on a sliding scale, if not actually free). If he's over 65, he'd qualify for any similar "department on aging" programs your county would have - but again - sliding scale. (So you may end up paying something).
An adult "day center" would allow you to be able to continue working (at least somewhat), but I'm not sure its a sufficiently protective environment for him, that's why if there were a specific center for the disabled they might be better equipped.
As far as medicaid - yes, my understanding is its a pain (a ton of paperwork). An eldercare or similar type of lawyer who specializes in disability/elder care/medicaid/ medical benefits would be smart.
I wish there was someway to file a retroactive claim against the disability insurance your husband had when he was a lawyer, before the brain disease was unrecognized and he had to stop practicing. In an ideal world you'd be able to prove that he should have gotten disability at that time, based on his lawyer salary, not that of his later employment - which was affected by his already existing disease that neither of you were aware of.
If he is a senior, do you have a local council on aging? Ours here can provide assistance in the form of recommending resources to help you.
What would happen if they tried to discharge him and you intentionally weren't there to pick him up? If you can't provide your own home care, and I wouldn't even try it in your circumstances, then they need to find him a suitable place to go and until then, they should keep him in the hospital. Stand up to them and don't let them bully you. If you need to have a lawyer for this, then see one right away.
From what you've said he doesn't need adult daycare, he needs focused rehab.
Does your state have a medicare ombudsman? Its the last ditch "threat" I would make here if I felt my loved one (who had medicare as primary insurance) wasn't actually getting the help they needed.
If your state does, you might be able to contact them and explain the situation..... no one knows what to do for your husband, SNFs won't take him because he is either too disabled, or not disabled enough, and you currently don't have the ability to provide sufficient hands-on care to get him the rehab he needs. You really should at least be able to get the full 100 in-patient "rehab" days he's entitled to, if he ends up needing that long (I know he's already used a few of those days during his times in the various SNFs).
Thanks for that idea.
BTW, my husband was in a hospital rehab program for about a week and in a SNF for two nights.
Quote:
Originally Posted by Briolat21
if you can't get him placed for at least temporary rehabilitation, you're probably going to have to hire private care. Here, that averages about $12+ an hour (non agency) or $22+ an hour (agency). Unless he has a LTC policy that covers home care, you'll have to pay out of pocket (medicare does not cover any significant at-home benefit).
You could also look for a drop-in center, but probably one more for "disabled" folks, rather than "elderly" as I don't think age wise he's really particularly elderly.
Is there any sort of center for disabilities (differently abled, etc..) in your area? No idea what kind of environment you live in, but usually more services available in larger urban metropolitan areas, as opposed to rural, sparsely populated.
If so, they might know of some programs that might be available (at least on a sliding scale, if not actually free). If he's over 65, he'd qualify for any similar "department on aging" programs your county would have - but again - sliding scale. (So you may end up paying something).
An adult "day center" would allow you to be able to continue working (at least somewhat), but I'm not sure its a sufficiently protective environment for him, that's why if there were a specific center for the disabled they might be better equipped.
.
Thanks for the ideas. I live in a very large, metro area so if anyplace has services like that we should have it in my city.
Quote:
Originally Posted by Briolat21
As far as medicaid - yes, my understanding is its a pain (a ton of paperwork). An eldercare or similar type of lawyer who specializes in disability/elder care/medicaid/ medical benefits would be smart.
I hoping to set up an appointment fairly soon. Visiting an eldercare attorney was "on my list" for several years but I never got around to it.
Quote:
Originally Posted by Briolat21
I wish there was someway to file a retroactive claim against the disability insurance your husband had when he was a lawyer, before the brain disease was unrecognized and he had to stop practicing. In an ideal world you'd be able to prove that he should have gotten disability at that time, based on his lawyer salary, not that of his later employment - which was affected by his already existing disease that neither of you were aware of.
we're all hoping the best for you both.
We really tried to get the disability insurance retroactively from when he stopped being an attorney. If he would have realized why he was having problems and would have gotten the medical documentation at that time they would have started the payments. But, without medical documentation from 2001 they could not do it.
Update, Tuesday, October 13, 6 PM.
The other traumatic brain injury place (an hours drive away) would not accept him because he is not "injured" enough. Apparently they only take people who have TBI that involve a lot medical factors such as tract tubes, significant nursing & medical needs, etc.
I appreciate the support & concern of my caregiver friends on C-D. This whole situation is so overwhelming I just don't know what to do. I'm afraid that the hospital will just say that he is discharged to go home & I have to deal with any problems myself (even though the rehab center that specializes in traumatic brain injury wouldn't take him because he was "too disoriented").
I left a message for his regular doctor and she left a voice message that I should just follow the recommendations of the hospital doctors as they are familiar with his current medical needs.
Does anyone have any other suggestions or ideas?
Thanks.
PS. I am starting to do some checking on Medicaid, but it is pretty complicated. I also have a referral for an eldercare attorney.
Thank you, I just contacted a local agency and am waiting for a return call.
I did contact that organization and met with an eldercare advocate the very same day. Unfortunately, it was too expensive for me ($90 to $110 an hour) for the future and my husband was too far along in his hospital journey for it to be helpful in our situation.
However, I really, really, really think that it would have made a tremendous difference if I had contacted someone like that in the very beginning for help.
I am definitely telling my friends about the company in my area. It is amazing.
I updated this on another thread but wanted to post it here as well.
My husband finally got accepted by a SNF for rehab, it had/has one star out of five on the state ranking scale. And, in some ways the one star was being generous but significantly below average is as low as the scale goes.
My husband is finishing his rehab therapy there, and his scheduled date to be discharged is November 11. The OT & speech therapist will be making a home visit on Wednesday to check out the new apartment to make sure that it is safe, etc. I have a lot of things to do before then & before he comes home.
So, the good news is that he is coming home. The slightly less than good news is that he will need supervision indefinitely. They would not give me a time line and it was pretty clear that it was at least for several/many months. Now, with good door locks & alarms, that would mean that I could take a shower or sleep or do other things in the apartment just not leave him alone. That means that I will not be able to substitute teach, tutor or run errands without him coming along.
So, both of our lives have changed, possibly/probably forever, because of that one fall.
I am preparing to sell the condo but that will take months of work (especially since I will be living elsewhere). As I go through boxes, look through our basement & storage areas I realize that I had been getting more and more behind on things from when my husband first became permanently disabled and I started to work extra jobs to pay the bills. It was just easier to put off things than to find the time to do them.
Financially it will be extremely difficult but my siblings are willing to loan me the money that I/we need to survive until the condo sells.
As always, I want to thank my friends on C-D Caregiving Forum for helping to keep me sane and for all of your support and suggestions.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
I was really hopeful that with some mild rehab he would bounce back after the fall.
Yet, another update. Tuesday, October 13, 6 PM
