Caregiver depression

[Wise Young]

Marmalady recently asked whether a particular poll was concerned with caregiver depression. I thought that this was a great idea. So, here is a poll for caregiver depression. Again, it is important that we distinguish between the ups and downs of daily life, feeling sad and depressed occasionally because of the circumstances versus feeling depressed and requiring medical attention or medication.

[marmalady]

Wise,

Boy, is my face red! I had intended to post a poll re caregivers, but my office was being painted and I haven't had access to my computer for a few days; thanks for doing my job for me! http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

[Wise Young]

no matter. I thought that you might have been busy. Wise.

[BJ]

Since none of the answers fit me, I'll answer and put my name to it. After 7 years of marriage, had one episode of something. Was not called depression but stress. Had a job that I was working 60+ hrs a week, my mom had to have surgury and the weather wouldn't let us get back to MN, my uncle passed away, hubby's uncle was diagnosed with colon cancer and then hubby broke his finger. During his re-eval they said it was osteoprosis (sp). When they said that I just started crying, his sci doc packed me off to the psych doc within 5 minutes. Spent a couple of hours for the next 2 days talking to him. No meds just some words of wisdom and haven't had anything like that again.

[cheesecake]

I think the diagnosis is called "Being Human"

[Wise Young]

Tag,

It would be great if others would add their descriptions. Depression means many things to many people and I am thinking that it would be best if, through such discussion, we could create a scale that would fit more people and get a better picture of both the stresses and problems that caregivers get. I was speaking with a friend and she was telling me how many caregivers may be suffering from depression and do not recognize it or may not admit it, even to himself or herself. Depression in caretakers is not often recognized. I think that it is important to be define the situation and that it be done not from a medical point of view but from a human point of view.

Wise.

[KDK513]

The most difficult part was admitting to myself that that I was facing a problem with my ability to cope. Though I welcome the support of friends and family there is a limit to what they can provide. Ultimately all decisions concerning my husbands care and rehabilitation were mine to make. He was relying upon me for most everything which was a big change in our relationship. You add responsibility for managing a household with children and aging parents, a job and so on. It's no wonder we sometimes feel like the walking wounded.

I have had to deal with anxiety, rather than what I would describe as depression. Eleven months post I finally saw my own Doctor who prescribed Zoloft which I still take. I wonder how much longer I will need to take this. That is a concern I have. It has helped tremendously and I no longer fly off the handle over minor things, you know the normal everyday things that may irritate you but should't result in blowing a gasket. It helps to focus on getting through today and not worry about tomorrow. I would add anxiety to the poll. Kathy

[marmalady]

I think I've had both; the stress certainly came immediately, with living in a motel the first month after Matt's accident, and dealing with the trauma, etc, trying to deal with insurance companies, close his bank accounts, get him admitted to Kessler here in NJ, then six months of rehab at Kessler and getting renovations done to our home, dealing with SSI and Medicaid both in S.C. and N.J.. When I look back on all that, I think my adrenal system just took over, and although I was exhausted and certainly stressed out, I was running on that adrenaline that comes with any acute event.

After Matt came home, the first year was still fraught with stress - not finding a competent aide, more insurance and medical problems, etc., getting up with Matt for turns and meds at night, so I was still running at max overdrive.

It wasn't until after we had found a good aide, and Matt was assuming more responsibility for his health/life, that I finally was able to - sort of- slow down, and that's when the depression hit. I 'crashed and burned' in January of this year, a little over two years post-accident. My feelings are hard to describe - the pain of seeing my son taking a half hour to dress - the knowledge that I couldn't go back to the life I had pre-accident - it all just caught up with me. I also think part of the 'depression' was finally the grieving cycle catching up with me.

Went to a psychologist - who told me in the first half-hour basically to quit whining, that lots of people had it worse off than me- i.e., Matt could do lots more than Chris Reeve, and look at that senator who's in a wheelchair and says he doesn't miss his life pre-chair! Needless to say, I got up and walked out.

Spent a few more months trying to reassemble my life as it was before, and felt like I was fighting against the tide, so to speak; then, read a book about a Zen student and his experiences in the monastery where he was the main chef; after months of trying to cook everything perfectly to please his master, and the other students, he was totally frazzled; he talked with his Zen master, who told him, 'just wash the rice - when you are washing the rice, just - wash - the -rice'. When i read that, it totally sunk in how I had been trying to reconstruct things as they were, not as they are.

So now I'm just 'washing the rice' of my life, and am at peace for the first time in three years.

[martha]

The most amazing part of this poll is that 2 of 7 respondents have not suffered depression. How is that possible? Could they please share their experience so that I can figure out what the devil is wrong with me that others can handle this "sanely" while I often feel I'm slipping over the edge into the black hole.

martha

[BJ]

After reading some of the postings since I put mine in. And right now going through hubby's 28 year re-eval. I thought I would add to it. Since we're back at Craig - I bumped in to the psych doc I saw all those years ago. He asked for a bit of time. Did a follow up on me and we ended up discussing all of this. The biggest help I got out of those few hours I spent with him was when he mentioned -- of all the things you have to worry about or at least have in your brain -- what can you remove to someone else - husband, kids, aides, hire someone -- do it. Can you losing sleep over it change anything? No. Can you spending hours worrying about "what if" change the ultimate outcome? No. Will the world come to an end if x doesn't get done? No. So ever since then hubby's list of things to address got longer, If I can't change it I refuse to worry about it. Mom & Dad although they are in their 80's are adults and managed to raise me just fine, they can and are capeable of making their own decisions and they will let me know if they need help. If it is mechanical or electrical and hubby can't fix it he will arrange for some one to come in. What if will just have to take care of it's self. What ever is going to happen in the what if department is going to have to happen without me worrying about it.

I realize it all sound rather simplistic but those words really helped me. The problems and stress are still there but I can't make it go away or change it so I just deal with each day and somehow tomorrow will be better. If the dishes are'nt done, the floor vacummed so what. Now I take 2 hours each day just for me. I might be reading in bed or watching TV, but for that time my world stops. Hubby is on his own, and we both feel better for it.

[martha]

Tag, Thanks for your clarifications. I wish it was as easy as it sounds. The intelligent side of my brain might tell me not to worry over things I can't control and not to stress over things I can't get done, but the other side is in a raging battle. Just saying I'm not going to stress isn't enough to make it stop. Yes, I've learned to live in a less than tidy house, though I hate it that way. Yes, I take a few minutes for myself, like now, but even so I'm watching the clock thinking it's time to get him up to start his program so I have time to get him showered and me showered for a noon appt but then that means I'm not getting my real job done this morning either (thank heavens for understanding bosses and getting to work from home). Maybe it's not so critical that the laundry is in a mountain in the guest room instead of folded and put away, but I do have to find time for the grocery store and preparing some meals. Darn, I forgot the inspection sticker on the car I've borrowed expired Sunday -- guess I'd better work that in too before I get a ticket. Which brings to mind that I've got to figure out what to do about a vehicle -- can't keep someone else's car forever. Guess I'd better find time to go car shopping too. Wonder how late at night they're open? Wait, can't do it tonight since I forgot to pay the bills on the first and they really need to get done first! Shoot, thinking of bills reminds me of the pile of insurance forms sitting here waiting to be filled out and returning the calls to doctors' offices explaining that yes, we really are partly covered, the insurance company is just very slow to part with money. Thinking of doctors makes me remember I need to make appts with his plastic surgeon. That reminds me that I never took the poor dog back to the vet to have her stitches removed from her surgery. Better call the vet. Which reminds me that the gate is still in need of repair so the dog can't get out. Need a good light so I can fix the gate in the dark. And so forth, and so on ad naseum. Sorry to ramble, but saying I'm not going to stress or get depressed just doesn't seem to make things happen that have to happen. When there are too many bb's spinning on the plate, they don't stay put just because you tell them to. All I really need is a few more hours in each day and the strength to use them wisely.

martha

[KDK513]

Nothing I respect more than honesty! I face the black hole every morning when I wake up. That's if I'm lucky enough to sleep through the night. Perhaps we respondents do not recognize depression even when it is there before us. We simply do not have time to acknowledge it may be present in our lives. If I allow myself to succumb to this then my family is lost and I can not allow that to happen. They are depending on my strength. It is yet one more responsibility.

Martha, it is everyday life, previous normal stressors ,teenagers, sick dogs, household repairs and so on that send me over the edge. Sometimes it is hard to look back and recall the time when I thrived on stress in my job and life. Now I constantly look for ways to simplify my life... not an easy thing to do... and still attempt to keep things 'normal'. Perhaps I need to redefine depression in my world, but that would be ,well, depressing.

[BJ]

Martha - how much of all that can you move to someone else, that mountain of laundry waiting to be folded - can son do some? Can he make some calls to get someone to fix the gate (an old friend etc). I'm sorry I don't remember his level but can he schedule the emissions sticker maybe get friend to take your car in. Hubby schedules all the auto appts and then just tells me where and when to be there and sends a list of what needs to be done (he used to be a mechanic). He and his service dog have even taken the laundry off the line for me. He pulls it down and puts it in a basket, the dog picks up the cloths pins that fly and puts them in the basket and then drags the basket in the house. He folds what he can an puts away the little stuff (sox and underwear) and then I do the big stuff that needs to be ironed for work. Even that little bit sure helps alot

[amber4302]

i can relate completly...i am extremly open to all types of energy...most al all negitive..and nothing seems to be anything but negitive in this house...the food was alllllright. and when i keep you up until 3 am...make sure your up by 8:30 am to make my french toast..and god forbid there is not enough syrup on it. and the dogs need to be fed twice a day , and why isn't my good brace clean..and all the baby birds you were taking care of died,,and be ready be 2 because i have to be there at 5 and i WILL procrastinate for hours . and when were in the van i WILL NOT use my tie down so....what ever you do do not step on the brakes...ooo yea and you take off way too fast.and can u please leave the kids home...Every Time we go out.and i think you;d better come home now...and hurry up..but stop and get me some sport bottles of water...and why do you have alchol in the fridge..i dint care if their ony wine coolers and you never ever drink..and why does that baby cry so much can't you make her shutup !!! o yea and can i have whatever food we don't have in the house beaause im really in the mood for it....im so sorry your tired but i have insomnia..so i need my ice cream at 2 am...and you keep forgetting to dump my urinal...and yea you do look really fat..but amb you just had a baby....
so needless to say i have every right to feel depressed..stressed, and sometimes look a mess
and i am not complaing ...just venting..because i do love you...all i want is to be appricated.

amber burke

[martha]

Amber, for a minute there I thought you had snuck into my house and we were living in a parallel universe! Then I got to the kids part and realized there's more than one man like my husband. What a shock that was! Then I read your profile and realized you're doing this for your brother. You do deserve more than simple appreciation and thanks. I love my brothers dearly, but there's a big difference in doing this for a spouse where there is a certain obligation and doing it out of love for a brother. And committing to it at an age that most of you us folks would like to remember as a little closer to being carefree. You truly must be an angel. Good luck!

martha

[marmalady]

Hi, Amber,

How old is your brother? Sounds like you need to set some limits! You're essentially caring for three babies, not two.

To make any household work, there needs to be respect for each member in that house - your bro needs to learn to respect you. The only person you should be getting up in the middle of the night to get ice cream for is yourself! He may feel really helpless, and some of his demands are acting out his anger, helplessness, whatever. Is there any way you can include him in things to make him more a part of the house, and allow him to assume more responsibility? Set time limits for things - don't let him 'procrastinate'- if he does, and he's late or misses HIS appointments, he'll get the message. It's not your fault. He has to assume responsibility for his own life! Why did YOU forget to empty his bag? He should be telling you it needs emptied, not leave it up to you to remember to check.

Hang in there - tough love works - I think you're an amazing sister, and there are very few sibs who would assume the life-load that you have. Your brother needs to realize just how lucky he is.

Find time for YOU - just you; even if you only had your own two babies, I would say the same. It's so easy to lose our own identity in caring for our families. It doesn't do them any good - the woman they thought they knew and loved isn't there anymore, because she's totally burned out and lost in the day to day mire of caring for others. Be true to you!

God bless us, every one.

[M.Elston]

Hi Martha, Hi Everyone.

I'll admit that I'm one of the two that said I've never been clinically depressed since the SCI. It is because my DD's injury is incomplete, and she is able to take care of the majority of her normal needs. The 'care' I give isn't even in the same realm as the care most of you must provide. Yes, she can take care of her showering, bathroom, other personal needs. Yes, she can stay home by herself and even babysit her sister. If she wants icecream at 2AM she can fetch it herself. She can even do her own laundry.
The stress I feel is more from fighting the medical system, trying to co-ordinate things so she can have a 'normal' life, and adjusting medications to manage her pain, spasms, and such.

Piece of cake!

M.Elston SCI Mom to 15YO incomplete L2-3

[robb909]

Well,
At the risk of sounding bias towards us with SCI's. This area really sounds like a venting area. Try Wheeling a day in our
life. You can bet we would sell our souls to take a mile "walk" in your shoes. So lighten up guys remember the door is always open, we are the ones who survived horrific accidents, disease you name it. After all is said and done we are the ones with certain dependencies. Its kind of pathetic to think you would come in here and "vent" its a depression board, not a can you believe I had to mow the lawn today or had so much laundry to do... BooHoo, you guys are the ones who need a reality check, not us !

T5 Complete 28yrs old
9 Months Post injury
And I have all the perks that come along with SCI's ALL OF THEM
I on the other hand Mow my own grass, blow my own leaves, change my own sheets. Support My little sister her 2 kids and her boyfriend. All the while still maintaining a relationship and my avian breeding business. http://sci.rutgers.edu/forum/images/smilies/eek.gif

[Stick]

RJ:

I just read your message. I need to tell you before I reply that I am one of two primary caregivers for my son, who is a C5 quad with a TBI. You also need to know that I have no interest in beginning a flame war on this topic. But your posting demands a response. I ask you read it carefully, as I and the others here read yours.

Firstly, you seem to be managing well with your SCI, and for that you are to be -- I don't think "congratulated" is the word. I think perhaps if we met face-to-face we'd just nod in acknowledgement of your ability to get on with it post-injury. What else are you gonna do, right? Let it kick your ass? No.

Though I do not pretend to speak for any of the other caregivers who post to this forum, I don't think any of us would say we know what it's like to be in a chair. I don't, and I promised my son from the start that I would never say I did, and I haven't. I also wouldn't trade places with you or anyone in a chair for anything in the world that I can think of at this moment. I doubt you would have either, before that tractor-trailer hit your car. I also doubt you'd willingly trade places with a T1 para, or a C7 quad, or a C4 vent-dependent, ad infinitum. Or a stroke victim, or a burn victim, or someone with any one of a long litany of ailments and injuries I could list here.

I'm not comparing sorrows here. What I am saying is that you need to know that every SCI injury is very different, and so are the conditions which result, and the effect that injury and those conditions have on the person in the chair. And whether or not you understand it, or are ready or willing to investigate or accept it, it also affects those people who love the person in the chair, and it also affects their lives.

I respect you as much as I can someone I have not met, but your post shows a remarkable lack of compassion and understanding, and some degree of bitterness, even through your obvious and proper pride in how you've handled that with which life has hit you.

Check this out, RJ. Before my son's accident, he booked hardcore punk bands from all over the country into N.J. venues. Kept track of hundreds of details. After his head hit the back of the seat in the SUV that rolled, he couldn't remember having seen the two-minute TV preview for "Star Wars: The Phantom Menace" literally three minutes after he saw it. No clue. Took him almost two years to remember to do regular weight shifts, finally did after a pressure sore that kept him in bed from January to July. Or how about this -- before my son's accident, my wife was finally living her dream of being a professional chef. In the three years since, she's had to give it up, quit her job, wave good-bye to her dream.

You gonna tell my son to stop boo-hooing, RJ? You gonna tell him he's somehow less than he should be because he couldn't remember to lean forward in his chair five times an hour, that he's not working hard enough because he can't change his own sheets? You gonna tell my wife who gave up her fondest personal dream to care for her son 24-7 that her pain isn't real? That she doesn't have the right to occasionally be depressed by it all, that she hasn't the right to cry once in a while, during the few daily moments she now has to herself? Is this what you consider "pathetic?"

My son would mow the lawn and change his own sheets too, RJ, but it takes him fifteen minutes to brush his teeth and half-an-hour to shave. He told me once, "You know, I'd be happy in this chair if I just had my triceps and my hands back. And my memory. The rest would be easy."

I'm not trying to disrespect you, RJ, but c'mon. We're not "boo-hooing." We're working our asses off with cath changes, pressure sore care, doctor appointments, bed/chair transfers, UTIs, spasms, neurogenic pain, keeping track of meds, insurance, supplies, trying to understand and be sympathetic to the moods and feelings of the person for whom we care, despite their often frequent disregard or lack of understanding of how their condition and mental/emotional/spiritual state affects us. We're getting up at two in the morning to turn them or clean up the water they knocked over or racing downstairs naked from bed to figure out what's causing the disreflexia that's jacked their BP up to 250 systolic, or tracking down the hole in the insulation on the hot water pipe under the sink that blistered their toe, or clipping their toenails so they don't get an ingrown toenail and an infection and disreflexia again, or cleaning up the feces in their bed because their bowels loosened while they slept. We can't just roll over and go back to sleep, RJ, just ignore it, say it's not our problem, too. If we did that, the people for whom we care might, well, die.

I love my son. My wife loves her son. His problems are our problems. Sure, we can walk around. If I could help you get up from your chair, I would. We all would.

I wish I had time to run my own business, RJ. I wish I had time to mow my effing lawn more than twice a month. I wish I had time to go out to dinner with my wife more than twice a year. I'm not bitching. This is our life now. But don't think we leave the room after taking care of business and go dancing.

Not every SCI is the same, RJ. You know that, or you should. But just as I, and the other caregivers here, wouldn't pretend to say we understand what it's like to be in your chair, do us the equal courtesy of at least admitting you don't understand or aren't ready or willing to understand what it's like to see someone you love injured, or respect how very difficult it can be to care for someone with SCI, and how it affects our lives as much as it does our loved ones -- people like you, people for whom we care. Give us the same respect we give you, and understand that it's eff-ed up our lives, too. We didn't ask for it any more than you asked to be in a chair. You don't have to understand or agree with how we sometimes feel, that we occasionally get depressed and worn out and need to vent to people in the same circumstances we are -- just respect it.

Reality check back at ya.

Stick

[This message was edited by Stick on October 21, 2001 at 05:45 AM.]

[This message was edited by Stick on October 21, 2001 at 05:49 AM.]

[This message was edited by Stick on October 21, 2001 at 05:51 AM.]

[marmalady]

RJ,

Welcome to the CAREGIVERS forum. We all have to play the hand we're dealt. We can't palm the cards, or ask for a reshuffle. Life doesn't work that way. Open door? Meaning we can just 'walk out the door' any time we want? I don't think so. That's not what family means to any of us.

I'm happy for you - that your injury is such that you have more mobility than some - maybe less than others - but you are ABLE to get on with it. Others aren't - either physically or emotionally or spiritually - and without the support of loving family members, they would surely die.

As caregivers, it's hard for us to 'vent' to folks we know - we just smile and say, 'oh, they're doing okay'. No one understands but the folks who are other caregivers what it's like to be on duty 24-7. This forum - I hope - is providing a means for all of us who are caregivers to be able to vent - and laugh and cry with each other - over the turn our lives have taken, as well as the turn our loved ones' lives have taken.

Please respect the above.

Jackie

[martha]

Guys, sounds like you two need to sit down and talk. RJ, with everything you can apparently do, why can't you get your own ice cream at 2a.m. and empty your own urinal? Amber, why is RJ supporting your boyfriend? I don't really want to know the answers, but sounds like a little more is below the surface in this situation than meets the eye. Could it be that other resentments are finding their way into the brother/sister loved-one/caregiver relationship besides just the obvious problems of being SCI and of being a caregiver? Just a thought. Flame suit donned, so fire away at will.

martha

[BJ]

Ok - this forum is designed to support the caregiver. Lets try and keep this part on track. RJ - all of us have no real concept what our loved ones go through, we have an idea of how we would feel but thats all.

We as caregiver need to have a place where we can discuss all the things we feel we can't or choose not to discuss with our loved ones.

Just as you and our loved ones get frustrated so do we.

[KDK513]

Actual clinical depression is not something you chose to have. It happens. You can't snap out of it, you can't wish it away, you must treat it like any other illness, utilizing all the medical resources available.

All our experiences are unique, regardless whether we are the injured or the caregiver. We cannot compare our pain, our sadness, it is not a competion, mine is not greater or less than yours. None of us should ever minimize the impact this has had in our lives. We face enough challenges without trying to determine who has it worse. We all have pain, it's ours, no can can take it away. If I wish to wallow in it for awhile, my choice; if I wish to ignore it, my choice, and if I am fortunate to find someone to share it with then I am blessed because noone should manage this alone. We have all suffered tremendous loss and continue the daily struggle to accept this new life. I don't think we will ever cease mourning; however, we all try mightily to overcome our sadness. With love and support we all may find joy and happiness in our lives. We simply have to look for it in different places and in other ways. Kathy

I, for one, think caregivers are amazing people. I think that men and women handle the job and its conotations differently through. I've met a lot of families with SCI, TM , MS and lupus now. One male caregiver and I had a nice talk about depression among the men. This is one of the few times we both agreed that it is probably safe for the person with the injury or illness to call the caregiver's doctor and ask that during their next trip in that the doc should do a not too shrink like evaluation for depression. If a male caregiver glosses over this when the subject comes up at home a few probing questions from their own doctor can have beneficial results.

I think women are more willing to seek their own help but if not I would do the same for them. If caregivers rarely see doctors maybe try to convince them to attend one of the many free screenings held each year on Depression Awareness Day (sorry, don't have the date handy).

And yea, my life in a chair sucks. But caregivers have it just as rotten in other ways. And caring for someone with no short term memory is propably qualification for sainthood. Would be in my book. :-)

And for the sister...slap that bro up side the head one day and say "listen up! I want some respect for what I do. I could be making a decent salary with a 2 year RN degree in many states and that's not a lot harder than what I do now for you. Actually I'd get time off and holidays. I do what I do cause you're family and I love you. But you start figuring out how you can help by checking out online bill paying, or maybe call the insurance company and find out if they have forms on their website so you can do that paperwork. And next time my birthday rolls around I better get flowers!" Brothers and sisters do have a different relationship and it may take time but I bet you both can benefit from it later.
Thanks to all of you for what you do.

Sue P.

[birdmoma]

dear rj,
how fortunate for your sister, her boyfriend and her children that you have the resourses to support them.
but more important, how lucky for you that you have the resourses to do so. i can not think of any better care taker than ones own family. who would care with love and compassion as only a family member would. as you have read on the forum, good help is hard to find.after sci moves into our lives,none of us are the same. the injury goes much deeper than not being able to walk,asyou already know. lives are shredded, dreams are shadered and a black cloud seems to hang day after day after day. but the sun still rises and sets,much to our dismay,and life must go on.why me? why my child? my husband my mother or father sister or brother? there is no answer to this question.all we can do is take this on one day at a time and hope tomorrow will bring a little more light back into our lives.
find new goals,dreams with new born vision.with the help of family and friends around us,we can accomplish anything we set our minds to do.look at what we have already done.
do not give up hope, there is life worth living with sci. it is not the same life,but you and only you can make it worth living.you have been given a second chance, you did not ask for it, you may not even want it, but it has been given to you. make it count for something.tired of sitting down? then do not take this sitting down. get rolling and make a diffrence in the world.enough thunder,where is the lightning?
be patient with your family, their world has been rocked too.try to be patient with them,it is hard to watch someone you love in constant pain, physical and emotional day after day. remember they love you and it is painful for them to not be able to make it all better.

[robb909]

Now see guys.........
Thats support, not complaining
This is what a support system should
hold SUPPORT.
Poor Stick, I bet it does really "effing"
STINK having all the weight bear down on you like that. Like you said all SCI's are totally different, why compare apple to oranges ?? I salute you, if only had such devoted parents I would be home now. It sure does seem crazy that how with all that 24/7 care your guy ended up with a bed sore. OUCH
I myself also am host to a bed sore, I guess they
should have rolled me more when I lay there in a coma for 2 months, WHO IS TO SAY?? You are all awesome people for
being there for us in our time of need. Your devotion and determination do not go unnoticed at all. I personally would like to Thank You all
your bouts with depression really really stinks.
I can say I wish I could take just one of your
depressions away .. I would!! I can just add it to mine (I take enough antidepressants for 2 people)
Its Great to see you all Stand Tall for Us. I knew u guys were not really complaining, but u have to admit it really was starting to sound kind of depressing in here just perusing through your posts .. THANK ALL OF YOU GUYS, YOU ARE TO BE THANKED.........
http://sci.rutgers.edu/forum/images/smilies/wink.gif

[mccc2]

I just finished reading most of the posts under this topic and it scares me. I'm extremely depressed and feeling totally burnt out and I'm not home yet. The past 6 months, I've used so much energy trying to make sure each discipline in a non-sci facility is doing all that they can for my husband C3 vent patient. I've exhausted so much energy keeping notes, writing letters, meeting with staff/CEO's and researching sci health and homegoing resources. I'm trying to get him moved into a sci program, but I've run into brick walls because he's 6 months post and considered a chronic vent patient. I don't know what else to do and I have no help, it's just me. I've been so involved with trying to monitor his care and researching things, I haven't even had an opportunity to greive and deal with my own emotional being. I'm thinking home will be so much better than dealing with this facility but reading these posts it sounds like it will be an ongoing nightmare. If we don't get the proper education before we go home, how will we manage mentally at home. Any one out there with any suggestions for getting him moved.

[marmalady]

Hi, Mccc2,

Re getting your husband into an SCI rehab - I would talk to someone in admissions at SCI rehab facilities in Boston - explain your situation, that not only is your husband not getting the rehab he needs for his SCI, but you're not getting the family education YOU need to be able to care for him at home. If you have the insurance and/or state/fed financial resources, I can't see that they would turn you down, even if he is a 'chronic' vent person. Rehab facilities are money driven, just as everything in our society today, and no one's going to turn down $$$!. Be dogged, be firm. What specialty is your husband's doctor? If he's not a physiatrist, ask for a consult from a physiatrist who specializes in SCI. Post your question re getting into an SCI rehab to the Spinal Cord Nurses on the Care forum; they work at rehab centers, and may have some good suggestions.

And for YOU - it's hard to say, don't get overwhelmed - I know, I've been there. The only way I got through everything was just to follow the old AA adage 'One day at a time'; I could only deal with what was in front of my face at that particular moment in time; every time I tried to look down the road, I got so overwhelmed I couldn't function. I think every caregiver gets scared at the thought of their family member coming home - all of a sudden, there's no immediate nursing/medical support, it's just you. Find a good visiting nurse service, and use them. My son had weekly nursing visits when he came home, and the nurse was able to help us a lot with getting things set up.

My grief issues didn't come up until my son was home with us for over a year, and we finally got some good, competent aide help at home. Only then was I able to relax enough to have it all hit me in the face. RIght now, you're functioning in that 'fight or flight' mode, all your energy is focused on the things that need to be done RIGHT NOW, and your emotions are on hold; just recognize that, and don't bury your emotions, but put them in a safe place in your heart to deal with when you can focus on them, rather than trying to deal with them while telling a contractor how wide to make the doors!

And lastly, know that you have the total support of everyone here; I know a little piece of my heart thinks of you and wishes you well, and is there to offer a shoulder whenever you need one. I wish you a holiday season in which you can find a little bit of peace and contentment. God bless us, every one. Jackie