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Hope for Best, Plan for the Worst
Old 10-25-2019, 10:38 AM   #1
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Hope for Best, Plan for the Worst

I will try and make a pretty long story as short as possible. DW has had issues with a spinal tumor. She has had two radical surgeries to remove what they can and it looks like eventually this will have to happen again. I won't get into the specific details, but because of the location of the tumor, excessive scar tissue and other issues, a third surgery comes with significant extremely high risk. Worst case is that she would become a quadriplegic (paralyzed from the neck down). Obviously, emotions are running very high right now and well, it sucks.

So, as a former military man, I am all about planning. I am retired and DW still works (I know, I am not retired...I am a kept man). We have excellent health insurance through Tricare and my retirement income/interest income is sufficient to maintain our current lifestyle. DW has short and long term disability so her income would continue for a while if she became permanently disabled. Obviously, expenses would increase. Exactly what that $ amount might be, we should be able to cover them.

What I am looking for here is the collective intelligence/experience with the good folks here. What things should we be considering in regards to this possibility? We currently live in a home that is suitable for most handicaps, so that box is checked. What I am not sure about is home health care, if long term care insurance is decent/possible for this situation, etc. I guess I am not really sure what I need to be thinking about. We have known for a little bit that the tumor was probably growing (increasing symptoms) but we both have been in a pseudo state of denial. Odds are very high that she will have to have a third surgery eventually.

Sorry if this has been rambling. I am short on sleep and my mind is going 1000 miles an hour.
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Old 10-25-2019, 11:04 AM   #2
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I am very sorry to hear about your situation and hope. The "best" is the result.

A short while after I retired from the Navy, the Federal Long-Term Care Insurance Program (FLTCIP) became available to military retirees. (I believe it had previously been only for civil service employees/retirees.) My wife and I enrolled when were in our early-mid 50s. My recollection is that we had to be medically underwritten but I don't know if that was because of our ages, the amount of time I had been retired or some other factor. It might be worth a check on the web to get more specific details than I'm able to provide.

Wishing you and your wife the best...
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Old 10-25-2019, 11:12 AM   #3
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When my DIL had a baseball size tumor in her brain stem she went out of state to a neurologist that only operates on this specific tumor. There was a good chance of having a bad outcome with this surgery it turned out perfect due to the skill of the surgeons. I would seek out a neurologist specializing in your wife’s type of tumor. I wish you all the best.
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I'd say something about prayer but I don't know what to say
Old 10-25-2019, 11:16 AM   #4
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I'd say something about prayer but I don't know what to say

I have no practical experience with LTC or home health care insurance, so I won't bother speculating on those fronts.

It sounds like you're already reconciled to DW losing some mobility. Beyond the house itself being handicap-accessible, what about transportation? Will you need to provide space/utilities/etc for specialized hardware such as monitors, supplemental oxygen, special beds or recuperative/physical therapy equipment? If you did have to engage nursing assistance for some continuous extended period, would there need to be quarters for the nurse?

If your household can accommodate her handicaps, and she's already covered with health and disability insurances, then I guess you're as prepared as you can be. Good luck.
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Old 10-25-2019, 11:18 AM   #5
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Sorry to hear of that challenge. Some practical matters come to mind. Review your home for wheelchair accessibility. Are dooways wide enough for you to wheel DW through? A moveable ramp at a short run of stairs can help. Do windows where DW would sleep have curtains or shades?
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Old 10-25-2019, 11:29 AM   #6
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Thanks for the thoughts and info.

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Originally Posted by Mdlerth View Post
I have no practical experience with LTC or home health care insurance, so I won't bother speculating on those fronts.

It sounds like you're already reconciled to DW losing some mobility. Beyond the house itself being handicap-accessible, what about transportation? Will you need to provide space/utilities/etc for specialized hardware such as monitors, supplemental oxygen, special beds or recuperative/physical therapy equipment? If you did have to engage nursing assistance for some continuous extended period, would there need to be quarters for the nurse?

If your household can accommodate her handicaps, and she's already covered with health and disability insurances, then I guess you're as prepared as you can be. Good luck.
I have the federal LTC insurance on my list to look at...I am slightly concerned that it wouldn't be covered since it would be from a pre-existing condition.

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When my DIL had a baseball size tumor in her brain stem she went out of state to a neurologist that only operates on this specific tumor. There was a good chance of having a bad outcome with this surgery it turned out perfect due to the skill of the surgeons. I would seek out a neurologist specializing in your wife’s type of tumor. I wish you all the best.
She has had the best surgeons...but the fact is that the previous surgery wasn't 100% successful in removal of the tumor (risk was much higher than the reward to attempt to remove all of it).

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Sorry to hear of that challenge. Some practical matters come to mind. Review your home for wheelchair accessibility. Are dooways wide enough for you to wheel DW through? A moveable ramp at a short run of stairs can help. Do windows where DW would sleep have curtains or shades?
All those bases are covered. When we purchased our latest home, it was the intention to age in it as as possible. Both my Mom and Dad aged (and died) in the home and when they had it built, they covered those bases as well. No stairs in the home at all...doors are wide enough and you can roll a wheelchair right into the shower.
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Old 10-25-2019, 11:56 AM   #7
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Very sorry to hear of this difficult situation.

It would be good for you two to have some serious conversations about the possible scenarios and what is important to each of you, then to make sure all of your legal paperwork backs those positions up. This may be hard as you say you've both been in denial.

For example, if there is travel on your bucket lists, perhaps she should quit her job or take a leave of absence soon so you can do that now while she is still definitely able to travel enjoyably. If the worst doesn't happen, then more travel later is a bonus. Also think about what would be most important to her if the worst does happen (what are options for what her days might look like if she was mostly homebound, are there things you can do to prepare for making that the best possible day for her every day?). You might also look for classes in your area to prepare you for being a caregiver.

Wishing you both all the best.
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Old 10-25-2019, 12:18 PM   #8
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First, my prayers for a wonderful outcome.

Finding the ideal surgeon for the operation. Looking at tge logistics of that if it's a distance from home. Flow chart possible surgical outcomes as far as rehab needed. PT/OT/etc and the ideal place to do that if you don't have one in mind already.

What about some respite care, someone to take nights early on and give you a rest. Or housekeeping help/yard help. Getting that in place might be enjoyable now and ease the future.

Transportation options. Car/van/service. Local metropolitan bus services sometimes do wheelchair accessible van rides for just a few dollars.
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Old 10-25-2019, 12:19 PM   #9
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Originally Posted by MBAustin View Post
Very sorry to hear of this difficult situation.

It would be good for you two to have some serious conversations about the possible scenarios and what is important to each of you, then to make sure all of your legal paperwork backs those positions up. This may be hard as you say you've both been in denial.

For example, if there is travel on your bucket lists, perhaps she should quit her job or take a leave of absence soon so you can do that now while she is still definitely able to travel enjoyably. If the worst doesn't happen, then more travel later is a bonus. Also think about what would be most important to her if the worst does happen (what are options for what her days might look like if she was mostly homebound, are there things you can do to prepare for making that the best possible day for her every day?). You might also look for classes in your area to prepare you for being a caregiver.

Wishing you both all the best.
Thanks for info. She knows that she doesn't have to work, but has chosen to (for now). After a few days of letting it all sink in, I think we will have a conversation about bucket list stuff. We are both home bodies, but obviously a significant change of circumstances (or potential) necessitates reconsideration.

She has expressed (we are on the same page) that any long term permanent paralysis of that level would probably result in a discussion with the "Final Exit" folks. Of course, like death...many of us say that we would take the "final exit" route but when actually confronted with it, can't/won't follow through. That is obviously on down the road so no need to discuss at length right now.

Legal documents are already taken care of...that's something that we have been on top of since we got together.

I guess I should clarify denial. We haven't really been in denial. She has been getting MRI's every 6 months for almost 10 years now. We knew that there was a chance that it would grow and it has been...the effects have just been negligible. But, we know that the more serious symptoms can come on pretty quick...been there, done that. So, instead of denial, it's more of a "day at time" thing. But, when the surgeon wants MRIs on a monthly basis due to growth rate and she now gets into the territory of having a condition that will be published in the NIH journal as well as being the subject of a large conference of renowned surgeons...well, s*its getting real.

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First, my prayers for a wonderful outcome.

Finding the ideal surgeon for the operation. Looking at tge logistics of that if it's a distance from home. Flow chart possible surgical outcomes as far as rehab needed. PT/OT/etc and the ideal place to do that if you don't have one in mind already.

What about some respite care, someone to take nights early on and give you a rest. Or housekeeping help/yard help. Getting that in place might be enjoyable now and ease the future.

Transportation options. Car/van/service. Local metropolitan bus services sometimes do wheelchair accessible van rides for just a few dollars.
Excellent information, thank you so much! Thankfully, if surgery happens, that will be about 35 minutes from our house...which is about the same time that we had to do when she was being treated by Emory in Atlanta. I also know that respite is very important...too many stories of my Dad taking care of my Mom and *refusing* to take a respite. His dedication was admirable, but not healthy.
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Old 10-25-2019, 12:46 PM   #10
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DW has had issues with a spinal tumor. She has had two radical surgeries to remove what they can and it looks like eventually this will have to happen again. I won't get into the specific details, but because of the location of the tumor, excessive scar tissue and other issues, a third surgery comes with significant extremely high risk. Worst case is that she would become a quadriplegic (paralyzed from the neck down). Obviously, emotions are running very high right now and well, it sucks.
I'm so sorry to hear of this, and my heart goes out to you both. I can only imagine how tough this must be to navigate... emotionally, financially, and otherwise. Wishing you the very best of luck, and sending good thoughts your way.
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Old 10-25-2019, 01:00 PM   #11
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Sorry to here this.

Have learned a lot as a result of my brother's catastrophic stroke 3 years ago.
Hospitals and nursing homes have "social workers " who can steer you to lots and lots of programs and help. We found that our local "elder services" is invaluable!! You might have to pay but they can act as the middleman in arranging all kinds of in home help, cleaning and bathing services and equipment. They can also help with transportation services etc etc.

Typing on my phone so cant go long, but PM me if you would like more detail...been there.
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Old 10-25-2019, 01:35 PM   #12
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I'm so sorry to hear of this, and my heart goes out to you both. I can only imagine how tough this must be to navigate... emotionally, financially, and otherwise. Wishing you the very best of luck, and sending good thoughts your way.
Thanks so much, I appreciate it. A couple beers with you at the Rose and Crown (now closed...boo!) would be a welcome reprieve right now.

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Sorry to here this.

Have learned a lot as a result of my brother's catastrophic stroke 3 years ago.
Hospitals and nursing homes have "social workers " who can steer you to lots and lots of programs and help. We found that our local "elder services" is invaluable!! You might have to pay but they can act as the middleman in arranging all kinds of in home help, cleaning and bathing services and equipment. They can also help with transportation services etc etc.

Typing on my phone so cant go long, but PM me if you would like more detail...been there.

Thanks. I might reach out in the future.
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Old 10-25-2019, 01:44 PM   #13
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I understand your wife's still working. Under the situation, she could go ahead and file for Social Security Disability even while she's working. It would be something you'd not have to deal with later if/when surgery's an issue.
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Old 10-25-2019, 01:49 PM   #14
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I understand your wife's still working. Under the situation, she could go ahead and file for Social Security Disability even while she's working. It would be something you'd not have to deal with later if/when surgery's an issue.
Interesting. Can you actually file is there isn't a disability? We wouldn't know until after surgery (or other treatment plans) which may not even happen. Right now, she could run 5 miles with no issues and has very little physical limitation.
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Old 10-25-2019, 02:32 PM   #15
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Wishing you both the best. Do have that discussion about her goals and wishes (I don't like the term 'bucket list'.) And take care of yourself - ask yourself what YOU want to do WITH her. I don't have any practical suggestions, just my good thoughts.
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Old 10-25-2019, 03:14 PM   #16
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So sorry to hear this news. IMHO your priority would be be to obtain the best health care options available. All the best .
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Old 10-25-2019, 04:21 PM   #17
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No you cannot file now for SSDI.
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Old 10-25-2019, 05:08 PM   #18
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Things to know: (depending on your situation and level of injury)
Typical 'routing' is Hospital to Rehab Hospital to Skilled Nursing Facility (SNF) to home. A SNF is typically a nursing home with a specialized therapy section.

IME, the SNF we found had extraordinary therapy and therapists but was lousy on communication and 'just ok' with everything else. We didn't care...he was there for the therapy. IMO you'd want to focus on how good the therapy is and overlook the other stuff. Shop around.

You MUST be a PITA in every area and every step of the way. I had nurses turn and walk in the other direction when they saw me coming! This isn't a popularity contest; noisy wheel gets the oil. "Oh crap! If his brother sees this there'll be hell to pay"

Same with the insurance companies. I was able to get weeks of additional coverage and therapy just by staying on top of them.

If your DW's LTI is like my brother's, they will pay right up but after a while will 'steer' you into SSDI (if applicable). They paid for the lawyer and everything. All I had to do was spend an hour filling out a few forms and a phone discussion. Took only several weeks for him to get SSDI.

Once you get her home, you're pretty much on your own as there is no real central coordination like there might be in a SNF; Visiting Nurses only go for about a month or two. But, as noted a good social worker at the SNF should get you a lot of help...we go through Elder Services which coordinates equipment, home health aides, home makers and transportation from a variety of vendors. They send a monthly bill but depending on income can range from free to a 30% discount vs doing it directly yourself.

Good luck and God Bless. Again, PM me if you need more info.
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Old 10-25-2019, 05:48 PM   #19
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So sorry to hear you are facing these challenges. Hoping the tumor is resolved without the need for your worst case plans.

I want to echo Marko's thoughts on squeaky wheel. My parents had the arrangement that my mom would focus on the positive outcomes and my dad would be the persistent person in the background making sure that absolutely everything was done to the best quality. He was the one who researched the different treatment options, picked up the language the doctors used to ask questions drilling down to the actual options and risks/rewards. He was also able to talk to the staff (nurses, doctors, receptionists, etc) to make sure that they knew he was paying attention and expected them to pay attention also. This *did* make a difference in the level of care she received. Be the squeaky wheel.
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Old 10-25-2019, 06:24 PM   #20
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(++) on being the squeaky wheel, both at the hospital and post surgical rehab/skilled facility.
If the staff know there is someone paying attention/documenting/questioning, they will tend to be more receptive and responsive (at least in my case with my dad).
Also, very important to take care of yourself.

Prayers to you and your wife for a positive outcome and quick healing.
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