25 replies to this topic

[gramma]

My 35 yo son-in-law is complete at c5, he is currently in acute rehab in SF, CA. We are struggling with finding resources for further aggressive inpatient rehab. I am caring for my 2 grand babies ages 1 and 3. My beautiful young daughter, 31 is struggling with the overwhelming challenges facing her and this very young family. Please! Can anyone give some resources for finding good care, coming home at this stage is not an option

[wheeliebear75]

If I might ask....what are the roadblocks for his coming HOME?

There are so many benefits to being in your own home & with family......

Once IN a nursing home as a resident it's a LOT harder to get services/funding to get back out & in the HOME AGAIN!

If we know the problem we can perhaps help find a solution.

There are quite a few people who even with C5 injuries live at home with only a little bit of outside help.

[Aparr]

I'm with wheeliebear75, give us some more info so we can try to help. There are in home aids and nurses and such that can come to your home to help out. We would love to help out.
April

[wheeliebear75]

I hope your daughter will also come here. Not only are there other wives who's husbands are of similar injuries but a couple of them even have babies as young as your grand-babies.....as a matter of fact one wife is expecting as we speak.

It feels a tad bit less overwhelming when you can have others help you navigate these bumpy roads ahead.

[WheelGamer]

I'm also in the Bay Area and I went to rehab all the way at Kaiser Vallejo. It was alright but I suspect most rehab programs try to get you out and back home ASAP. It's a good and bad thing in my opinion. You may want to start talking to a social worker and getting your son-in-law on State Disability and make sure they help you begin the paper work for Social Security. My social worker was crap and didn't tell me about those things. I don't know how your hospital operates but they should provide social workers, just be ready to grill them otherwise they probably won't give you the right information. If insurance permits get whatever physical therapy you can exercising his limbs to prevent muscle atrophy.

I'm just spouting what comes to mind and hopefully some of it helps. I'm sure with a little more info others can give more advice.

[gramma]

wheeliebear75, on 07 September 2011 - 12:09 AM, said:

If I might ask....what are the roadblocks for his coming HOME?

There are so many benefits to being in your own home & with family......

Once IN a nursing home as a resident it's a LOT harder to get services/funding to get back out & in the HOME AGAIN!

If we know the problem we can perhaps help find a solution.

There are quite a few people who even with C5 injuries live at home with only a little bit of outside help.

[gramma]

My daughter has had to put her home on the market, it is a tri-level home and not really adaptable. We would never consider a nursing home, and had hoped to find a place where he could locomotive training and other new skills. But I fast realizing this won't be an option. So now we have to find new suitable housing and of course transportation. There is very little money available and the timing we are looking towards is short about 4 weeks. There are 2 babies in the house as well. He can not yet even be sat fully upright in his chair without passing out. I guess my question what should our expectations be at this change? Thanks!

wheeliebear75, on 07 September 2011 - 04:45 AM, said:

I hope your daughter will also come here. Not only are there other wives who's husbands are of similar injuries but a couple of them even have babies as young as your grand-babies.....as a matter of fact one wife is expecting as we speak.

It feels a tad bit less overwhelming when you can have others help you navigate these bumpy roads ahead.

Thanks. Where are you in San Diego? Thanks for the help!

WheelGamer, on 07 September 2011 - 07:29 AM, said:

I'm also in the Bay Area and I went to rehab all the way at Kaiser Vallejo. It was alright but I suspect most rehab programs try to get you out and back home ASAP. It's a good and bad thing in my opinion. You may want to start talking to a social worker and getting your son-in-law on State Disability and make sure they help you begin the paper work for Social Security. My social worker was crap and didn't tell me about those things. I don't know how your hospital operates but they should provide social workers, just be ready to grill them otherwise they probably won't give you the right information. If insurance permits get whatever physical therapy you can exercising his limbs to prevent muscle atrophy.

I'm just spouting what comes to mind and hopefully some of it helps. I'm sure with a little more info others can give more advice.

We have a good Case Worker, the State Disability has started. Are there tips on finding rental property? Special programs? Anything? Is anyone out there on Medi-Cal?

[Kaylee]

My Husband Hunter was injured on 7/28/2010 just shy of 2 months after we were married. When I first brought Hunter home he to had a lot of low blood pressure problems, though they weren't has bad as you son in laws they were something that gave me many worries, they have since got much better. Just over 1 year of being injured, Hunter is back to working full time as a Counselor at a Substance Abuse Rehabilitation Center, he also is back to driving. We have a 6 month old baby girl, with another baby on the way, his spinal cord injury has not for a moment stopped Hunter from being a amazing Daddy. Our Daughter is a Daddy's girl through and through, she lights up like a Christmas tree when she sees him come home after work, he's a very involved Dad. I just want to lend any support that I can, you're not alone at all. This will be a bumpy road for your Daughter and Son in law, but that can make it, they can still have a "normal" married life, their children can still have a great Daddy. I would suggest trying to get your Daughter to come join us, this site helped me through a very scary time.
Remember we're here, Kaylee

[wheeliebear75]

See if the hospital's social workers can work any "magic" with the HUD/section 8 under EMERGENCY HOUSING. Because his home is not something that could be made easily accessible they MIGHT be able to help. There are some 2 bed room apartments that could be made usable without any MAJOR modifications made to it/them.....this would allow them to have the 2 girls in 1 room & them in another.


As for the passing out: THAT is AD, Autonomic Dysreflexia.

http://www.apparelyz.../autonomic.html

And this may be something he has to learn to live with & may have to use a tilting/reclining wheelchair. It is also POSSIBLE that the effects of AD may decrease with time.


I misunderstood what you meant in the 1st post with finding a place for him. Sorry.

[gramma]

Kaylee, on 07 September 2011 - 10:03 PM, said:

My Husband Hunter was injured on 7/28/2010 just shy of 2 months after we were married. When I first brought Hunter home he to had a lot of low blood pressure problems, though they weren't has bad as you son in laws they were something that gave me many worries, they have since got much better. Just over 1 year of being injured, Hunter is back to working full time as a Counselor at a Substance Abuse Rehabilitation Center, he also is back to driving. We have a 6 month old baby girl, with another baby on the way, his spinal cord injury has not for a moment stopped Hunter from being a amazing Daddy. Our Daughter is a Daddy's girl through and through, she lights up like a Christmas tree when she sees him come home after work, he's a very involved Dad. I just want to lend any support that I can, you're not alone at all. This will be a bumpy road for your Daughter and Son in law, but that can make it, they can still have a "normal" married life, their children can still have a great Daddy. I would suggest trying to get your Daughter to come join us, this site helped me through a very scary time.
Remember we're here, Kaylee

[gramma]

Kaylee,

What a wonderful story. I guess you have been right where we are.. hard to imagine the future. My son-in-law may not be quite the man your husband sounds like, but we hope he can rise to this. Tell me how do you cope financially, I know your husband works, but can you give me some insight into how you dealt with the 'system' for the numerous and expensive needs this new life presents. I mean my daughter will have to sell her home, his loss of income means they can no longer make payments, our family is helping, but we are making priorities. Anyway, your wonderful words on this would be most welcome. Not sure how usual it is to have the ole' Mother-in-law so involved, but I have been caring for my grandchildren and their busy working parents for a while now. Hard to see myself NOT part of this piece.

Thank you,

Leslie

wheeliebear75, on 07 September 2011 - 10:47 PM, said:

See if the hospital's social workers can work any "magic" with the HUD/section 8 under EMERGENCY HOUSING. Because his home is not something that could be made easily accessible they MIGHT be able to help. There are some 2 bed room apartments that could be made usable without any MAJOR modifications made to it/them.....this would allow them to have the 2 girls in 1 room & them in another.


As for the passing out: THAT is AD, Autonomic Dysreflexia.

http://www.apparelyz.../autonomic.html

And this may be something he has to learn to live with & may have to use a tilting/reclining wheelchair. It is also POSSIBLE that the effects of AD may decrease with time.


I misunderstood what you meant in the 1st post with finding a place for him. Sorry.

Hey, thanks. No worries, digital communication is all too often "miss-communication". I am really happy to have found this site. I am just really curious about how people cope financially and practically after this. I mean my son-in-law, pre-accident was not much on taking challenges and working them through, we hope he will see things differently now. I mean his choices, have made the forever and ever, life changing impact on 2 young children, their mother and of course himself. Just curious how, from where you sit, does this compute or does it even?

Thanks again,

Leslie

[Aparr]

I can share a couple things that come to my mind. Start to apply for social security disability as soon as possible. I don't know what state you are in but here in PA it also gives money for dependents. Again I'm not sure if all states are the same but it's something you may want to check on. My home is what they call a california split level home. It is characterized as such being 3 different levels too. When I first came home I couldn't access the main level of my home but I was able to come through our garage and used a portable metal ramp to get into one our rooms. There we put a hospital bed for me until we were able to move forward. I also had nurses and aids that came into take care of me. They were covered at no charge to me through the United Cerebral Palsy. This was some of my thoughts/experiences. I hope it might help.
Take Care,
April

[Kaylee]

gramma, on 08 September 2011 - 01:09 AM, said:

Kaylee,

What a wonderful story. I guess you have been right where we are.. hard to imagine the future. My son-in-law may not be quite the man your husband sounds like, but we hope he can rise to this. Tell me how do you cope financially, I know your husband works, but can you give me some insight into how you dealt with the 'system' for the numerous and expensive needs this new life presents. I mean my daughter will have to sell her home, his loss of income means they can no longer make payments, our family is helping, but we are making priorities. Anyway, your wonderful words on this would be most welcome. Not sure how usual it is to have the ole' Mother-in-law so involved, but I have been caring for my grandchildren and their busy working parents for a while now. Hard to see myself NOT part of this piece.

Thank you,

Leslie

wheeliebear75, on 07 September 2011 - 10:47 PM, said:

See if the hospital's social workers can work any "magic" with the HUD/section 8 under EMERGENCY HOUSING. Because his home is not something that could be made easily accessible they MIGHT be able to help. There are some 2 bed room apartments that could be made usable without any MAJOR modifications made to it/them.....this would allow them to have the 2 girls in 1 room & them in another.


As for the passing out: THAT is AD, Autonomic Dysreflexia.

http://www.apparelyz.../autonomic.html

And this may be something he has to learn to live with & may have to use a tilting/reclining wheelchair. It is also POSSIBLE that the effects of AD may decrease with time.


I misunderstood what you meant in the 1st post with finding a place for him. Sorry.

Hey, thanks. No worries, digital communication is all too often "miss-communication". I am really happy to have found this site. I am just really curious about how people cope financially and practically after this. I mean my son-in-law, pre-accident was not much on taking challenges and working them through, we hope he will see things differently now. I mean his choices, have made the forever and ever, life changing impact on 2 young children, their mother and of course himself. Just curious how, from where you sit, does this compute or does it even?

Thanks again,

Leslie

We have been very blessed with housing,at the time of Hunter's accident we were living in my parents guest home, we lived there until December when we moved from Rhode Island to Hawaii, Hunter's parents the lovely people they are purchased our condo here in Hawaii. When Living in Rhode Island I worked as a Youth Minister, we decided when we moved I'd be a housewife. We are very careful with money, I'm a pretty frugal person, we don't go out a lot. I'm not sure if you've seen the t.v. shows about couponing, I'm one of those nutty coupon people. I spend about 2 hours each day looking on the computer printing out coupons and have neighbors save their coupons for me, it does take some time but I have not spent more then 20.00 at any one given trip to the grocery store( that includes cleaning and baby products). I don't just buy any thing that is one sale, I stick to the brands we like and when I find a good sale I do stock up, it's become a bit of a game for me. I wish I could be more help and give more advise.

[Tetracyclone]

In regards to disability payments, one applies, then gets rejected on the first pass. This is SSI modus operendi. Then go to the local SSI office and appeal . When they see your son-in-law they will quickly clear away obstacles. You do have to wait 6 months from the accident before he can receive payments, but whenever payment begins it will be retroactive to that 6 month date. Do get the process started as it is time-consuming. Do not get discouraged- the government's communications are meant to discourage people so they give up. it is nothing personal.

I know nothing of other resources. Yes, this is a brand new world, isn't it?!

Since you are not in much admiration of this guy's character, if your daughter was already sick of the relationship she should not stay in it just because the guy got hurt. It is a bit unlikely that his character will change radically, yet such things happen. I will keep a good thought for that.

[wheeliebear75]

I receive SSI & get $800 something (I don't manage my $ my mom & B/F do because of a brain injury) a month & live in So. Cal. under the "maximum benefit" meaning I'M multiply disabled; legally blind, Traumatic Brain Injury, & Spinal Cord Injury. My Mom has been paying for what Uncle Sam doesn't since....well....I was 14 when I got hurt & haven't been able to work. Most of my inability to work is due to the MULTIPLE disability part. Being legally blind & finding a job is one thing. Being legally blind AND being in a wheelchair is a whole different story, let alone once you toss in the brain injury. Although now it may seem like this is hopeless it seemed like that at one point for all of us. The whirlwind does dissipate at some point. How YOUR son-in-law does is something only time will tell. But just know that although you have seen the folks on this site extend a helping hand......rest assured we can & do give people a good kick in the arse when needed too.

[KayDub]

As far as finances, I live at my mom's house with my fiance. I was in Australia working for the Red Cross with my fiance who's from Perth before I got sick (I don't have an SCI just GBSesque-paralysis in both legs) and was sent back here. I had just graduated from undegrad and when I worked there I only made enough to get by. Australia pays far better and I had budgeted out my life to included a summer's worth of work before coming back on an academic scholarship to law school. What little money I had made at my job was used for practical needs (food, gas, etc.) that the insurance didn't cover when I was finally out of hospital before I got sent home.

While our rent is free and our food is generally free (my mom thinks my two teenage brothers still live here and buys food accordingly), that's all we've got. I lost my car thinking I could drive it and can't buy a new one. My fiance is also a student doing classes online through his uni in Australia. He gets small government payments from Australia as a student, which is really what we live off of. I love my mom, don't get me wrong, but not having a car to drive (she doesn't want me to put hand controls on her car, and I don't even have enough money for them), not having a job and doing nothing but school is taxing.

But then I remind myself I'm very lucky. I don't have a husband or children to support, no house or mortgages, no car payments (my little car was all paid for finally... sigh), etc. So in the scheme of things I'm very lucky.

I'm not applying for SSDI, despite being 23 and a college grad my dad does some... interesting things on his taxes that it would mess up. But instead I am meeting with the vocational rehabilitation counselor in our area. The awesome disability student services coordinator really encouraged me to set up a meeting, and see what they could do to help me complete school better. They might be able to help with rent in an accessible place close to campus (I live about 30 min away at my mom's without traffic and since I have no car/can't drive it's a hassle to find people to take me). They can also help with laptops, things you need for your wheelchair, anything that helps you go through school or learn ways to adapt at work so you can get back into working society. It's not perfect for all disabilities or SCI, because of the different levels, but for my low level, incomplete damage it's the perfect program for me. They might be able to help, just search for _____ (your state) voc rehab.

Good luck, best of thoughts are with you and your family!

[WheelGamer]

I'm afraid I'm not in San Diego but San Diego has a rehab center called Project Walk I believe. It's pricey though and insurance most likely won't cover it. As far as finances go I've had to rely on insurance for a lot of things necessary items (eg commode, catheters, wheelchair, etc). I've been lucky enough to have my parents house me and feed me as well as other relatives help me out. Finding work was a pain but it is possible!

Is there a Center for Independent Living in your area? They usually have good tips and advice on other options more tailored to your son-in-law's needs.

Medicare won't kick in until he's been on Social Security for two years. Medi-cal is worth applying for if your financial situation is low enough. Chances are you will be rejected the first time around but you can reapply.

I also wanted to suggest you look into adapted physical education classes. In my case I found some at the local community colleges. I don't know what it's like in other districts but the adapted P.E. class was very similar to physical therapy sessions at the hospital. It also provided a positive group setting for me when I was first learning how to get out and about with the wheelchair.

Thanks for being such a proactive mom! b^_^

[BigSis_K]

Hi gramma

Since I'm in NJ & in a similar boat, I don't have much to offer as far as resources. I am also finding it difficult to locate any assistance for services/mods in NJ. My younger brother (about your daughter's age)is 3+ weeks post injury with what they seem to be calling C7 complete, still in TICU, still on a vent, one problem after another, and he also has a similar personality "deficit" as your SIL & we also hope for a little change it that during his recovery...you're not alone.

Is the current rehab ready/trying to "send him home"? What is that hospital's position on his current condition/need for additional therapy? Have you told them that you don't yet have accessible space for him, perhaps they can refer you somewhere? Honestly, as a social worker myself, this all sounds like stuff a social worker SHOULD have knowledge of & access to (since the programs are buried deep & hard to locate, but damnit I know they're there). If he's on public insurance, maybe that's why they're pushing?

Good luck & come back & post any good info you come across as I'll be fighting the same battle on this side of the country :-)

[gramma]

Wow, you guys are awesome! I am so glad I found you. While there are a range of experiences here, I see a clear theme. Family has been there for most of you. That the 'resources' available are not really resources at all. Just basic human rights. We have all of the disability going, insurance, the bill for the past 30 days was $500,000, we owe about $20,000 of it! So we have realized that we will be bringing him home in this home or another, we are just heading for open doors and seeing which one closes first! This whole thing makes me so angry. I mean really, this is the best we can do?! I'm sure I am not alone in this and trust me I am not encouraging anyone to feel a sense of entitlement because of an injury. But , PLEASE, shit happens and we should as a community be able to do better.

We are very blessed up here in Nevada City, CA. I started a charitable trust(super easy) for my daughter and her family, so far the community has raised over $30,000 for them! Not to mention the donated services and other offers. A gas card for example, I mean it does really help. So I guess we are doing a whole lot better then I thought.

Talk soon,

Leslie

BigSis_K, on 08 September 2011 - 06:06 AM, said:

Hi gramma

Since I'm in NJ & in a similar boat, I don't have much to offer as far as resources. I am also finding it difficult to locate any assistance for services/mods in NJ. My younger brother (about your daughter's age)is 3+ weeks post injury with what they seem to be calling C7 complete, still in TICU, still on a vent, one problem after another, and he also has a similar personality "deficit" as your SIL & we also hope for a little change it that during his recovery...you're not alone.

Is the current rehab ready/trying to "send him home"? What is that hospital's position on his current condition/need for additional therapy? Have you told them that you don't yet have accessible space for him, perhaps they can refer you somewhere? Honestly, as a social worker myself, this all sounds like stuff a social worker SHOULD have knowledge of & access to (since the programs are buried deep & hard to locate, but damnit I know they're there). If he's on public insurance, maybe that's why they're pushing?

Good luck & come back & post any good info you come across as I'll be fighting the same battle on this side of the country :-)

[gramma]

I love it, 'personality deficit' perfect! Anyway, he has great insurance for now, only another 60 days then we will pay for COBRA, which is a federal law requiring the extension of benefits after termination of employment. This gives the patient the option to pay his/her own premium, regardless of health condition, of course the premium is $$$$, but we will find a way. The Case Workers are pretty good, I mean seriously, there are just really not a lot of resources, except going and begging for funds, services etc. Yes, they do want us to take him, quoting some crazy statistic, that 87% go home and do PT or OT in outside facilities. But no matter what all issues aside, I mean my SIL, has a bowel and bladder program alone that will make a grown man cry! Forget the fact that he is over 200 lbs, and it currently takes 3-4 people in the hospital to get him out of bed and into a chair. Yep, together my daughter and I do not weigh that much, but they are dead serious!

Anyway, you have been great, keep me posted on your progress. I am fast seeing that we have way more then I thought and that I should be grateful.

Thanks

[wheeliebear75]

Many hospitals & nursing homes are not allowed to use a lift because IF you don't get the person positioned just right they can fall out & get hurt, having 2 or more people using the sheet they are already on makes it more "fool proof" that the patient wont get dropped. The 2 of you @ HOME would probably use a "Hoyer Lift" which once you learn HOW, you could lift him with one person. There is a technique for rolling a person & sitting them up without straining yourself too much & I would ask the nurses and/or PT/OT to show you how. Since he has/had insurance what ever you do DON'T LET IT LAPSE! Unless things have changed many insurance carriers choose not to take individuals who are at high risk for health problems OR they pull the "per-existing condition" crap which means they'll stamp that P.E.C. on everything from equipment to medications to the doctor visits (I'm pretty sure they'd pay for the strep throat & ear infections....but everything else they'll attribute to his SCI). Since the home is owned & not rented if there are any carpenters or people with skills in building/fixing/renovations they might be able to make ramps or lifts to bypass the stairs. You said people/businesses have donated services....maybe ask your church group or put an add/story in the paper requesting such help?

[Ginny]

When a person first gets injured with SCI, it's like a pile of puzzle pieces gets dropped out of the sky and you feel as if you need to put them together all at once. Very overwhelming! I feel for you in all this is doing to your family. A lot of good suggestions have been made by other posters and I know you're doing what you can to follow every lead. I know things will come together in the end, but also know how hard it is for you at the moment. Just wanting you to know that I understand and care about what happens.

[gramma]

Today was a good day. We visited this PT Clinic in Oakland, SCI FIT. The guy that runs it is a c5, complete, he has been using crutches since being injured 3 years ago, he even has use of his fingers! Amazing and there are many many more like him in his clinic. He offers alot of hope and cautions that each case is different. My SIL is refusing a wheelchair! He says he won't need it! We told not to get too carried away, but all in all the first time I saw a true smile on my daughters face. What kind of physical therapy is common? What are other experiencing.

[Trinity]

gramma, on 11 September 2011 - 02:13 AM, said:

Today was a good day. We visited this PT Clinic in Oakland, SCI FIT. The guy that runs it is a c5, complete, he has been using crutches since being injured 3 years ago, he even has use of his fingers! Amazing and there are many many more like him in his clinic. He offers alot of hope and cautions that each case is different. My SIL is refusing a wheelchair! He says he won't need it! We told not to get too carried away, but all in all the first time I saw a true smile on my daughters face. What kind of physical therapy is common? What are other experiencing.

I would be very wary of any place that says a c5 complete can use crutches and has finger movement. It doesn't sound like the guy that runs the place is being very honest with you, I don't mean to be on a downer but you need people to be honest, that's not to say hope is a bad thing but if all that is going to happen is disappointment then this can have a really counter productive effect

[Izziwhizzi]

Yes, the term 'complete' means there has been a break/damage to the spinal cord and paralysis/loss of sensation etc are 'complete' (ie totally paralysed) beneath the level of his break. A C5 complete will not have use of any of their fingers let alone be able to move about on crutches.

The passing out all the time when he gets up phase will go eventually, maybe in a month or two as his body gets used to it, but that doesn't mean he will stop feeling faint when he gets up or eats. I still feel faint at some times, especially if I've been in bed much longer than 8 hours, and I am nearly 30 years post injury.

Many people do step up to the mark when they get paralysed, so hope your SIL does. He honestly don't have any other alternative if he wants to carry on and forge a good life with his family. Well the alternative is that he will loose his family. It may take a while though for him to realise this and stop feeling sorry for himself.

So pleased you are considering all the financial implications - sounds like your daughter has her hands full.

Goodluck!

I x

[gramma]

I hate to think anyone would lie about their situation. Especially since this guy comes from the Fraiser Clinic in Kentucky, a Christopher Reeve facility, which also fund Sci-FIT, while we are cautiously optimistic, we know too that SCI diagnosis is outdated, and that this science can be greatly improved upon. So for now we will try everything, my SIL, as you say either WILL or WILL NOT push on and he may very well end up without him family, but it won't be because we didn't try.

Thanks.