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**marmalady** · 26 Jan 2005, 5:38 AM

Hi, JK - Yes, we're all busy doing the same kinds of things you are, in one way or another; trying to manage our lives and those of our family members, too. You do have it tougher than most, tho.

I remember your situation before, but can't remember all the details, so forgive me if I'm asking questions that have been 'asked and answered'! Why was your son turned down for SS? Does your/his insurance not allow for any HHA at all? Do you have a local Independent Living Center you can contact - perhaps they have some suggestions. Where did he rehab? Close by? If so, can you contact the social workers there for some suggestions? Church groups for respite care? Friends to come in and stay with your son so you can have some breathing time?

You and your family are doing an awesome job, but you're going to circle the drain if you can't find anything. Let us know where you live, and perhaps we can find some resources for you.

((((HUGS)))))))

_____________
What people say, what people do, and what they say they do are entirely different things. - Margaret Mead

**BeeBee** · 26 Jan 2005, 6:57 AM

Agree with Marm. My son is a t12 para, 6 months post. Dad does live with us and we have insurance help. I know that doesn't help you, just commenting.
Your situation? Your other 2 children at home are old enough to start helping with the household stuff. I know you may feel guilty asking them to "give up their childhood" or whatever, but sometimes life sucks (duh?). In the long run, the kids will be better for having had responsibilities and learned disipline over hanging with friend or at the mall (not to say they don't get to do that too). Assign them housekeeping chores (dusting, vacuuming, straightening up and laundry), then hold them to it. Also learn to let them do it their way and not to sweat it when its not perfect. Yes, you'll have a few pink tshirts and dusty corners for a while...
Can your oldest daugher cath and turn him when she gets home, before she hits the sack?
What about getting someone else to take your 11yr old to school? Bus, neighbor?
Also think about what your son is able to do for himself. Push him to do as much as possible.
I guess what I'm saying is to require help from your family. You're all in this together and in the long run they'll benefit.

**jk jr** · 26 Jan 2005, 10:19 AM

Thanks, BeeBee and Marm, kids do help out, oldest daughter gets home too late but does alot of his caths when she can, we are in Southern cal, rehabbed at Loma linda, they are all great except for the social worker we had, she did nothing at all, especially to prepare for coming home or after we got home, social security denied based on he is a minor and everthing was based on my income, they kept lowering there reqiurements, at first couldnt make more then 40,000.00 then when I showed them I had only made 23,000.00 a year that was even too much.
I know he is going to need a PCA, especially when he goes to college, as he is 17 1/2, he is still at a time when who it is who will help bothers him, but he also understands that I need some help. Any and all suggestions are greatly appreciated.
Its just that when I look here in caregiving, you can see the posts are old and average about a week apart, I think the people with sci can also contribute to this section on how they get things done, as well as us caregivers, this section used to get alot more activity and helped but as of late it looks like we all just get back to what we do as theres not alot of encouragement for caregivers.

I think when he turns 18 he will have alot more services avaiable to him that will help.
Thanks for letting me vent I just needed to let out some steam and here from other caregivers, thanks again

**Lizbv** · 26 Jan 2005, 12:01 PM

I am a c5/6 and have no "family" assisting with my care as they live several hours away and in other states. I've found that networking has helped, and placing ADs various places has gotten me through. A great place to start is student newspapers at nearby universitys or stores, or places you know and like the clientel of, etc. If you can learn to help with your son's care, then why can't someone else do it regardless of if they've been in "healthcare" or not? I think you must weigh the variables of checking the person out so your son likes the individual, etc. Casual conversation in getting to know others is good. Maybe since your not in dire need, interview people and just get used to that. Have them interact with you all in your daily situations and then include them in your sons care if you all like them.

In your post you stated "I know that every quad and most Para's have people who care for them". Well, this may be a generalization but the above statement is likely not true. Some Low level quads and paras generally do not have people assisting them. Your a great Dad for helping tho. Your son is lucky thus far. I know what you mean about the caregiving/help issue. It seems kinda Taboo in our society, yet it is a need many have, and live with everyday.

**zillazangel** · 26 Jan 2005, 2:54 PM

Hi JK ....

I'm the wife (sorta) of a C4 complete quad and we have a live in PCA that is paid partially by our state's Independent Living program through the Division of Vocational Rehabilitation. I said I'm sorta his wife because we haven't legally married because this benefit would be taken from us financially if we married due to my income. So for now, we are mentally married. [img]/forum/images/smilies/smile.gif[/img]

But our PCA is off from Friday at 5 pm till Monday at 6 am, and so I know some of what you deal with because Chad is totally paralyzed from the shoulders down and we have a four year old. So things are NUTTY and HECTIC because I have to do all the housework, all the shopping (he comes with, but still), all the cleaning, all the bill paying (most is on autosuck from our checking, but there are always stupid little bills here and there), all the everything ... you know?

If a lightbulb burns out, I change it.

If the freezer comes unplugged and everything thaws, I clean it and buy new stuff.

If there is a water leak, I must find it and fix it.

If dinner needs to be cooked, I cook it. If lunch needs to be made, I cook it. If breakfast needs to be made, I make it. If anyone needs a snack, I get it.

If Chad needs his eyes rubbed, head scratched, or shoulders adjusted, I do it.

When we leave the house, I have to unbuckle his arm straps, chest strap, lean him forward, fight like dog with his coat to get it on, strap him all down again, then strap everyone into the carseat, wheelchair buckles (we don't have an easy strap system and our ramp is manual) ....

So yeah, I know what you mean. On weekends, I fall into bed on Sunday night after the last cathing and bowel program at around 11:30 pm and think "geez! I'm glad to be going back to work tomorrow!". And you have it harder even with 3 kids and trying to work from home and no PCA.

I'm going to send you on private topics the link to a great caregiver group that has LOTS of information on resources, state by state. The moderator there is a woman named Marie - tell her I sent you and I hope you find some help by joining that group. Set the email preference to daily digest or "no email" or you'll be absolutely flooded with email every day. But use the documents she has there on the yahoo site as reference material, it's tremendously helpful. I can't imagine there isn't anything out there to help you.

Also, do you go to church? (I don't) - or even if you don't, could you approach a church with your situation and ask for help with respite care? I'll do some more thinking, but there HAS to be something to help you.

Hang in there and we're all in this together.

Ami, bedraggled caregiver sometimes, triumphant and empowered other times!

**Obieone** · 26 Jan 2005, 3:27 PM

Hi jk .... yes I suppose what you say is true about our Caregiving forum ... it seems to go in spits and starts and all it generally takes is someone's post to get everyone kick started ...

We cover a wide range of "caregivers" who are "caregiving" ... (there's even been some discussion if the term caregiver is an accurate term to use in all cases) ... for example my spouse Bill is the one in our family who is sci (T5 complete) who unfortunately has had some serious side health issues these past few years ... he is independant as far as his personal care goes but I do find myself switching roles from wife to "caregiver" for any number of reasons with some frequency - it would be difficult I believe for him to live alone without some regular assistance ... we cover alot of territory on this forum which can involve sisters, brothers, wives, husbands and of course parents ... frankly its meant to support anyone who is caring for someone with sci not only with the sharing of details getting through a "normal" day physically but emotionally as well [img]/forum/images/smilies/eek.gif[/img] ...

Just ask the questions you need answered and I can pretty much guarantee you will get at least some response .... using the Find feature for past discussions on the subject in question may also be of some value ....

Obieone [img]/forum/images/smilies/cool.gif[/img]
P.S. Glad you found CC sounds like you have a very full plate [img]/forum/images/smilies/smile.gif[/img] ... we're pretty good listeners here at the "Sanctuary" ..

**okwjoe** · 27 Jan 2005, 3:28 AM

JK

I just do not how you do it alone. thank god your son has you as dad. I do not know if California rules are different from New York in regard to Medicaid. My son is 14, (going to be 15 on Super Bowl Sunday), anyway we applied for Medicaid under medical assistance portion of medicaid and we are elgible for 46 hours a week of help from a PCA. We hace to hire them and train them becuase the county will provide for fully trained ones but they only work 8- 4:30. gee.. So we hired ones from an agency and they come in from 6 am- 9 am and 8 pm to 11 pm. they get paid by medicaid . also has your son had urodynamics We just saw a neuro-urologist and he said we can wean him off the caths , because of what 85 % of cervical SCis have ( I forgot what is called) but anyway we lucked out by finding him a good urologist in Manhattan. He is turning 18 soon.. he will be elgible for SSI or if he is going to college Vocatiional assistance r/t monies or help?
God bless you both and I liked the picture of your son with Hulk Hogan

Joe

**zillazangel** · 27 Jan 2005, 8:50 AM

Gosh, I hope I didn't sound like I didn't love Chad in my post. When I re-read it, I sound like a huge whiner!!!!! But I suppose that in the "sanctuary" (I love that word) we all understand here that when I write all of the hassles and the frustrations of daily life, that it sometimes overwhelms me, but it doesn't mean I don't love him with all of my being.

KWIM? (Know What I Mean)?

Ami <--- just clarifying!!!

**marmalady** · 27 Jan 2005, 1:03 PM

You didn't sound whiney at all, Ami! Maybe we should start a thread like 'What's your typical day?', lol!

jk - maybe in partial answer to your question, a lot of us who were here at the 'beginning' of the forums are beginnng to move on, and get our own lives back - somewhat - on track. I know that's true for me. No longer does my life revolve around my son's care; oh, yes, it's still there very much in the forefront, but I find I am reclaiming little bits of my life and freedom back, as time goes on (about 6 1/2 years for us now). There were a group of us at the start of these forums who were all in a similar 'time line'; we bonded together, were very close for a long time; now many have begun to move on.

Not to say this site and other, newer family members and caregives aren't important to us anymore - you always were and always will be! If we can give advice, we'll be there; we'll be there with shoulders to cry on, and smiles of joy too. And I hope that we can provide some of the newer family members with the insight that life isn't over; one of my very favorite quotes is from Michael Crichton, in Jurassic Park (of all places!) -
"Life - will find a way".

Life will find a way for all of you, too; even though in this little moment of time, you may not think so. One day, a little curtain will open back up in your soul, and a little ray of sunshine will creep in, and you'll smile - again.

I love you all - you are all family!

_____________
What people say, what people do, and what they say they do are entirely different things. - Margaret Mead

**kate** · 27 Jan 2005, 11:12 PM

jk, could you please check your private topics?

**jk jr** · 29 Jan 2005, 9:11 PM

Thank you all, I know where to turn when things seem tough, I know we all have our days and moments, Maybe some are moving on, but we never really do, we are in this for the long haul, I just look at this forum for insight on how other caregivers cope, or even ideas on where to get help, you have all provided some great hope for me and my family, and i hope this thread also helps others in simular situations, thanks again and I will keep you all posted on how things go, and would like to hear and see more on this thread on where caregivers can turn.

**espousal** · 30 Jan 2005, 1:09 PM

jk,

In response to your original post about the lack of activity on the Caregivers Forum; the caregivers are too damned busy and burned out to post.

Hee hee. I missed a lot of the previous posts to your question. I've been busy. But, your point is well taken. You sound like you have a busy schedule, far busier than my own that involves caring for a two-year old and a fairly independent quad wife. Even with that little of a burden, I feel exhausted both mentally and physically.

Everyone will tell this, and I'm sure they have, get some help. This situation will consume you and destroy you if you don't get it under control. Explore the insurance (Medicaid, private carriers, etc.), lean on friends and family, do what it takes. You can do this alone.

You must get some help. It is fairly well documented that you will become burned out at the pace you describe.

Sorry, must go write a letter to the insurance company.

**rbyrd49100** · 30 Jan 2005, 2:20 PM

JK.
it sounds like you and your family are doing the best you can at this point. Just know that Jackie is right when she says things slowly get better. I also find that I have more and more personal time for myself to read, etc. Hopefully your son will recieve some of the services he has been denied before too long.

Our most vexing problem is Steve's bladder capacity. We have to cath every three hours around the clock. During the day, he can do this, but at night it is easier for me. One of the best things about a cure will be when we can actually have four hours of sleep in a row :&gt[img]/forum/images/smilies/wink.gif[/img]

Russ Byrd

**jonimueller** · 24 Mar 2005, 12:16 AM

My husband is a para and I am his sole caregiver. Since coming home from rehab last April, he's needed less and less care, but there are still routines to follow, and all this is in addition to holding down a full time job (which we desperately need because he's on my insurance).

I'm lucky that my boss is flexible and lets me keep late hours (9:30A-6P). I get up in the morning and fix breakfast for my husband and we watch the morning news while we eat. I go to work and usually come home for lunch. Sometimes he gets up and into his chair and fixes lunch for both of us; sometimes I bring something in from outside. Then back to work. When I get home one or the other of us fixes dinner, I wash catheters every other day or so, do laundry three times a week (lots of linens and bedclothes to wash). Because our bathroom is so very small, my husband cannot use the shower in there I give him what I call a "spit bath" every weekend, except once a month we check into a local hotel with a roll in shower for the weekend and he takes a nice shower and we have a nice time in the hotel. It is all that our income will permit. Insurance pays for no bathroom renovations or shower chairs. (Those are considered "convenience" items, what a load of horse hockey!)

He's gaining independence but there's still a long way to go. I believe he needs to find something to do around the house to feel useful again. I've encouraged him to get on the computer, but he wasn't much of a computer person before his injury, so that's not likely to happen, as far as I can tell. We are looking for a piece of property on which to build our own home so that it will have everything he needs to function properly, e.g., roll in shower, lower sinks, lower kitchen cabinets, etc.

Life is a shit sandwich. Eat it or starve.

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