This is why we need our commune.  Sigh. 

This is copy and pasted from the ARCH Respite website: "The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area to match their specific needs.   It is worth a try to at least call them or attempt a web based search.  You have a lot on your shoulders and you need some support -don't be afraid to try and get it. 

I?m not trying to start a respite care war, but I think this is part of the fallacy about home care and caregiving.  The idea that there are easy to use or even not so easy to use services out there really isn?t true when it comes to conditions like high level quadriplegia, ALS, and various others.

 

I just have used the respite locator service and basically the service provides you with a list of home care agencies in your area.  We already use a home care agency for approximately 50 hours of care a week.  Getting set up with an agency isn?t just a phone call.  There is an intake process, a care plan established by your physician, and also the issue of identifying and training appropriate caregivers.  It?s not like you can even call up your own agency and say hey my dad?s in the hospital come on over, or my sister?s in labor hurry it up.  If you are not on the schedule which was contrived a month in advance, there is no way you can get a spur of the moment caregiver.  It just doesn?t work like that.  Even being clients for the last 5 years and private paying for home care services, we still have regularly scheduled shifts that go unfilled for various reasons.  In nearly every city, there are more patient hours than available caregivers.

 

If, let?s say, I would need to be away for an overnight, I would start working with the agency at least 4 months in advance to get this scheduled which is above and beyond our regular hours.  Plus, there is certainly a major cost factor involved using agencies.  In my case, state law dictates that only a skilled caregiver, if hired through an agency, can perform services in our home due to my husband?s condition.  50/hrs a week equates to over $100,000/year.  Not many can afford these types of respite services.  We choose the agency route for various reasons, mainly extended care coverage my husband holds which will reimburse for a percentage of skilled care an agency provides.  We are lucky to have this policy.  Most people do not and could never afford the expense of so called respite care    

 

Maybe this illustrates my entire point.  There is no entity that can provide spur of the moment care to cover the things I am lamenting about here which is missing various critical, non-planned moments in the lives of my parents, siblings, and children.

 

It?s not just me that has a lot on my shoulders.  It is all of us family caregivers.  I am not unique in my situation.  Look on the paralysis map.  For so many of the orange pins, there is at least one or more green pin standing in the shadow of that orange pin.  The green pins are suffering right along with all of those orange pins; we just aren?t on the map.  In fact, we are on nobody?s map.

You have a lot on your shoulders.  It can be be overwhelming to love and have the need to provide care for someone and so many at the same time.  There is a great organization called ArchRespite -National Respite Network  http://chtop.org/arch.html  They are a resource center that can help you find respite in your area, set up a web program --where people can sign up to help you with respite --so, next time someone states: "let me know if there is anything I can do."  You can go to your respite schedule and take them up on their offer-- and much much more.  Try them out and see what they can do for you. 

Also many states have respite network.coalitions -you may want to type in those words and your state and see what pops up. 

 

The reason I have never tried any respite networks are that his skilled care needs are so great.  It takes me at least of couple of times of orientation to get an RN or LPN trained to stay with him.  Everyone always suggests respite care, but how does that work when someone has such skilled needs?  Surely you can?t expect a respite volunteer to perform tracheal suctioning which he might need at any time.  How do respite volunteers know the signs and symptoms of AD?  Surely a respite worker can?t perform the bowel program, perform trach cleaning or give a Lovenox injection.  These are the things that keep me at home which he needs every single day.

 

My husband?s elderly parents can come over and physically sit in the house with him.  They can feed him, wipe is mouth, scratch his nose, turn the TV channel and just be here.  But what they can?t do are the things I mention above plus the physical nature of getting a C3 quad into and out of bed.  They can?t do that either.  Their help gives me at most 4 hours away.  Sometimes your life as a daughter, sister, or mother can?t be accomplished in 4 hours.  Unfortunately my father?s kidney transplant and triple bypass took longer than that, and I missed them both because of this very issue.  Also since my husband?s injury, my mother has survived breast cancer.  I couldn?t take her to any early morning treatments because I had a C3 quad husband home in bed with no volunteers to do his bowel program and get him up. 

 

I just don?t get this respite suggestion that everyone makes.  Sure I can see it for elder care when needs are not skilled but when you are talking skilled needs, it would be totally irresponsible and unsafe for me to leave him with some volunteer or neighbor.  Even his educated sisters which live within a few miles of us can?t manage his care alone.  They aren?t even willing to take on the skilled aspects of his care.  If it was just a matter of getting a body here, that wouldn?t be hard at all.  The problem is this body better know some serious skilled care techniques or my husband?s life could be in danger.  Where do you find respite volunteers like that?

Have you tried joining some of the caregiver networks?  Maybe another avenue for you.....I hope this can give you a little more support. 

www.caregiver.com  www.nfcacares.org  www.familycaregiving101.org

www.wellspouse.org/ http://groups.yahoo.com/group/scic/  www.caringroad.com

Dear Trish,
I read this post last week and didn't say anything because I didn't know what to say.  I read it again today and feel the same way only more strongly!  So my sense of helplessness and for you, makes me want to begin to send off lots of little ideas for you.  But that is really about me.  I want to know about you.  Given the external factors of your life, what would you like?  If what you would like is a venue to express your frustrations to people who understand, then I am happy you have found us. 

But what I would like for you is a different kind of respite.  I would like for you to be able to find respite in your heart and mind.  Just to be able to notice moments during the day when you were aware of feeling peaceful or grateful or happy.  And if those moments aren't there, my great wish is for you to be able to cultivate them.  But, that could all be coming out of my helplessness.  Or, it could be coming out of heartfelt care for you.  Probably a little of both.
Dan

You know Dan, that is a good question - what do we want?  I have a virtually identical set of issues as Trish, and I think the thing I want most in the world is to be able to VENT without having trite suggestions served up to me. 

 

What I just wrote probably feels offensive to hazeleyes ... and is exactly how I feel when I'm given suggestions to call for respite care or to join website xyz, etc etc.  After 6 years, I have tried that all, and it hasn't helped. 

 

So really, for me, its about being able to articulate that this SUCKS for caregivers as well as the person with an SCI.  I feel invisible alot of the time, but when I'm not invisible I always fear being attacked for feeling so burdened since I can, after all, walk.  But sometimes I don't want to walk.  I just want to sit down.  I mean that metaphorically, I obviously do not want to have an SCI.  But its just the recognition that full time caregiving is a truly impossible job that is truly impossible not to do.

 

 

bbs, I couldn?t have said it better.  Websites don?t help in the least when you miss being at the hospital when your father is undergoing a triple bypass.  The Wellspouse network does nothing for me when I have to forego my niece?s high school graduation.  Caregiver.com can?t do a thing for me when I am sick as a dog and have called all my husband?s sisters and begged them to help me get him in bed.  But they all have other plans, so I drag myself off the toilet and somehow get it done.  And no yahoo group can work any magic when I have to tell my kids year after year that I can?t take them on a spring break trip. 

 

These groups are useful in that you know you?re not alone, but as far as a solution to what we face, they don?t offer a warm body in your home to take your place so you can be someplace else.

 

Like bbs articulated, when you are the walking wellspouse, your right to complain about anything is essentially eliminated.  I think even if I had cancer, the statement would be made?.well at least she can walk.  Your needs and desires become null and void simply because you can move and your husband can?t. 

Hazeleyes, the same goes for me.  I don't think I communicated it well, but I know that you have good intentions in offering suggestions.  But as you can see, solutions are hard to find. 

 

LOL Trish - I soooooooooooo relate!!  I have pretty much nixed any appts before 1 pm unless it is a true last resort.  It does take a rather long time to get going, to say the very least - even without the complications of a kid in school and my own job, time off, etc.

 

Ratherbflyin - you are very, very perceptive.  I think that I instinctively do as you suggest, and others have - to find joy in moments, whether they be fleeting or longer.  Here's a thing I do that takes 13 seconds (I've timed it). When I fill up the dog's water bowl, I do nothing but breathe deeply and look out the kitchen window.  I focus on filling up my lungs, feeling my breath, looking for birds, and doing nothing.  I used to drop the bowl in the sink, turn on the water - turn to the dishwasher, start unloading it (its shocking what you can acutally do in 13 secs!), then grabbed the bowl, put it on the floor and kept rolling.  All of this of course contributes to feeling frazzled all the time.  So I decided one day that when I fill up the water bowl, then I am going to ONLY fill up the water bowl.  And I have to do this 2x a day, so for 26 seconds a day, I relax. 

 

Really, it is the smallest things sometimes that help.  And likewise, the smallest things that can make you lose your mind (like suggestions of doctor's appts at 8 am!!!)

 

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Sorry to you both -brightblueskies and Trish 411, I was not trying to be trite or minimizing your situation.  I was simply trying to give help in the small way that I could. I am sorry you found it so offensive, it was not meant to be. 

Hazeleyes1-In reality, I knew you meant no offense by your comments.  I guess I always get at little defensive with some suggestions.  To the everyday population they do seem like real answers.  They sound like real answers and perhaps should be real answers, but really most caregivers that have been doing this for a number of years can tell you many of these suggestions aren?t the answers we are looking for. 

 

I feel the same way when my husband?s physician who is a physiatrist with a sub-specialty in SCI suggests my husband have a CAT scan at 8:00 in the morning.  I am exasperated that I have to explain to him why this really doesn't work.  Doesn?t he realize that an 8:00 a.m. CAT scan means I have to get up at 4:00 a.m. to get my husband through his morning routine, up, dressed and transported to the hospital?  He should understand this, right?  But in reality he doesn?t.  I often have this feeling that people think my husband gets himself up in the morning, goes to the bathroom, showers, shaves, eats his breakfast, brushes his own teeth, gets dressed and then sits himself into his chair and stays there for the remainder of the day.  Do they forget that someone else is doing all of this for him?  More times than not, it seems that way.

 

My husband uses a sip-n-puff chair.  One day we were out and someone actually asked me if he drives a car.  Comments like that make me crazy.  I?m thinking does he look like he can drive a car.  Geeze he can?t even feed himself, but that is really how clueless the population is.  It just isn?t an obvious connection that someone else is performing all of these ADLs each and every day for someone else.

 

Hazeleyes1-I wish (only if you would feel comfortable with it) you would tell us a little more about yourself.  I feel like you certainly have some knowledge, expertise, interest, and insight into SCI.  I don?t get the sense that you just stumbled upon this site.  Sometimes it helps when we know a little about the person we are directing our comments to and what makes you interested in SCI and everything that surrounds it.

• I want 6 hours of uninterrupted sleep.


• I want to sit in the passenger seat of the car and let someone else do the driving.


• I want to have my spouse make mad, passionate love to me.


• I want to have sex.  Just plain simple SEX.


• I want to be able to stop planning for how, when and by whom things will get done.


• I want to be heard, to be understood as also a victim of SCI.


• I want to sleep in a regular king-sized bed in our original upstairs bedroom.


• I want, just one night, to go to bed early and have my husband clean up the kitchen, help with the homework, let the dogs out and in, and lock up.


• I want someone else to plunge the toilet when it clogs and overflows.


• I want someone else to kill wasps and cockroaches that find their way into the house


• I want to be touched.


• I want to be spontaneous.


• I want to be able to complain and moan without being seen as selfish, evil, both or worse.


• I want to have friends and family offer to help and actually help.


• I want to take a vacation.

 

I posed this question..What do we want?.. to my other walking wellspouse friends.  Above is a small list of wants we all seem to have.  These are really just simple day to day things.  Yes we do want these things, but I think it is more.  The problem is I can?t really figure that part out.  I have heard the saying?When you don?t have what you want, you had better start wanting what you have.  That is what I can?t seem to do.  I just don?t want what I have.

 

Each Sunday I look at the calendar and try to figure out how I am going to survive the upcoming week.  There are times this week when I need to be at two different places at the same time for different things and that doesn?t even include my responsibility at home for my husband.  These are the things I don?t want?not one little bit.

 

Dear Trish and bright blue skies and others,

your stories break my heart and open it up.  I have been in your position where I am suffering and those who care about me feel helpless so they say stupid things.  And I felt angry when that happened.  But behind that anger it just reinforced my feeling/fear of being alone in the world never been understood by anyone ever again.  And I know this happens with you when all of these fellow humans tried desperately to change the truth of your life by giving you ideas.

As one who cares about you, the truth of your life causes me pain.  And maybe that's a good thing.  Maybe if a thousand people could feel a tiny little bit of what you go through, it wouldn't change your life, but you wouldn't feel so alone.

And I want for you all of the things you want.  And it's painful to read and listen to because your wants really are simple things that almost all humans take for granted (except maybe the mad, passionate sex).

I want the world to read your posting and with your permission, I'd like to share it with my world.

I wish you continued love and the continued care and companionship you find on these pages.  But most of all, I wish you peace, even if it occurs moments at a time.

Dan

Dan,

 

You always have my permission to share my thoughts with your world.  I guess that is the whole idea.  I wish I could better articulate this dilemma.  Just so nobody gets the wrong idea, it doesn?t escape me that people suffering with these injuries and diseases aren?t getting what they want either.  I?m sure my husband has a huge list of things he wants and some may be the same as mine.  I guess the difference is that he has no choice in the matter.  He can?t undo what has been done; he didn?t make the choice.  The choice was made for him.  The wellspouse has made the conscious decision to give up their wants for someone else?s needs.  I see that as a difference.

 

On Friday I had to take our boys to the dentist.  So I?m sitting in this pediatric dentist?s office reading a book called 90 Minutes in Heaven.  In walks an elderly lady with her grown disabled daughter.  The mother had to have been in her 70s.  The daughter might have been 40.  The daughter had obvious physical and mental disabilities.  She was blind and was walking behind the mother, holding on to her waist, with her head leaned up against her mother?s back.  The mom signed her in, sat her down, took off her jacket, brushed her hair, and quieted her a couple of times when she started speaking rather loudly.  I couldn?t help but wonder what this mom?s life had been like.  I wondered how many of her wants/desires/dreams were given up long ago.  I wondered if she ever found respite care.  I know she must love her daughter very much, but I just wondered if over the many years she had felt frustrated, tired, and all the things I feel. 

 

He daughter was finally taken back and the mom picked up a magazine.  I really wanted to go over there and sit next to her and talk to her but didn?t.  Just like me, maybe waiting in the dentist?s office with a magazine was her little bit of peace for the day.  It also struck me that had I walked in 15 minutes after I did, I would have thought this lady was the grandmother to some rowdy kid.  Her situation was invisible.  I hope things like this make me more compassionate to others.  It is impossible to just look at someone and read their heart and soul.   

Trish-

Yes, I do work in the paralysis field but I also have family members affected by it.  One immediate (but not as extensive as yours) and one extended family member.  Both from disease that has ravished their bodies over time --not injury. 

bless you trish your husband is fourtunate to have you i agree nobody seams to understand the effect a sci has on a person or a whole family i have c3 c4 fused with donor bone metel plate and screws the made it possible for me to sort of move ive been this way since 02/08 i have nobody in my family my parents are gone my 3 sisters have their own lives and problems {yes i asked} i have a daughter that lives 2000 miles away is newley married and a mom {a boy} she lives with her mom that has been a x for 9 yrs i had a step family of 5 years my money stoped so did they {go figure} i get rides through the state to dr i get clean every day im greatfull for that im not much of a people person im alive got god and my littlle dog i respect you for what you do for your husband and all others that care for persons like him and i i can hold you touch you love you respect you in my heart through god all i can do is hope this will help relieve just a smigon of your daily stress god blessyou hang in there you are a piller to mankind i will pray for you to have some relief to come your way it may not be alot but every little bitty bit adds up Ronald Grover Riggs 56 years old

Trish your welcome im not going to say much today im at the end of my day and my typing finger and arm are wore out thanks again blessyou im new to all this i wont always be able to do this dayley i'll do my best Ronald

Hi Ronald,

 

Thanks for your kind and caring words.  I really appreciate them.  I wish you had more family support but please continue to post here and hopefully you will find support in this community. 

 

I?m not a saint, not an example, really not an anything?I?m just a wife and mom trying to survive a circumstance that I wish I wasn?t in.  Now if I was telling you how fulfilled I was caring for my husband, how grateful I was that God have given me this opportunity, and serving my husband?s needs has brought meaning to my life and I wouldn?t trade it for the world; well then, yes, maybe that is approaching the level of sainthood.  Unfortunately that is not the place where I am and really that is part of the problem. 

 

As a caregiver, I often hold myself to that sainthood standard.  I want to be all things to everyone in the family.  When I can?t achieve that standard, I totally beat myself up about it.  I want to be that saintly caregiver, but I am not.  Yes, I do all the physical things for my husband and kids.  Their physical needs are always met, but many days I am just going through the motions especially with my husband. 

 

I put him to bed nearly every night by myself and many nights I can do the whole routine without saying a word to him.  It?s not that I?m mad at him.  It?s just that this is a task to be completed; another ?to do? before I can finish my day.  It?s sort of like cleaning the bathroom.  You do it because it has to be done.  You?re not angry about it, but you just get down to business so you can check it off your list and move on to the next task.   That is a little how it is.  Some days I can be more engaged than others, but there are certainly days I am too burnt out to utter a word.  I?m glad for the engaged days and know that the silent day will pass, and tomorrow I?ll have the chance to do it all over again.  Who knows what kind of day that will be?  I?ve stropped trying to figure it out or mold the day into anything.  It just comes, and I do the best I can. 

 

A few days I go to bed feeling like it was good day, and I made the world a little better.  Many days I go to bed feeling it was just a day, and everyone got what they needed and we all survived.  Some days I go to bed knowing the day just totally sucked, and I contributed to making the day crappy.  100 goods days don?t make up for that one crappy day.  Unfortunately it is that day that lingers in my mind and makes me feel like such an inadequate caregiver, wife, and mom.     

I felt so tremendously guilty when I read your post Ronald ... I wish that you had a better situation.  But then I looked at the title of the thread again ... SCI steals and robs from all ... ALL of us, however we are affected.  Take care.

For the past 15 years or so I've been meditating every morning.  Sometimes I close my eyes and start to monitor my breath and my body/mind starts to scream that I don't have time to do nothing I've got to get out of there.  And then a few minutes later it's not screaming but it's coming out with some creative ideas but still not focusing on my breath.  And then I will meditate on love or life or death and everything inside will be open and I'll feel peace.  And then my mind will start raising again and it will feel awful and can't wait till the session ends.  So what's the difference between formal meditation practice in real life?  Just noticing without judgment.
My life is difficult and I am so grateful I have one I can barely speak.  What I wish for Trish and all the other caregivers is that when you rest your head at the end of the day you know that you have helped sustain life.

Just wanted to let you all know that I?m listening and trying to implement all of your de-stressing suggestions.

 

Here is my story from yesterday.  In typical harried fashion, I am rushing home from work because the nurse is leaving at 4:00 p.m.  However, one of the kids has signed up at school to bring in some sort of food from Nepal that we have to make.  The catch here is that he has just informed me that he has this list of classroom food allergies that has to be accommodated.  One allergy is dairy which is key to our Sel Roti (Rice Bread).  My plan is to stop by the store on my way home and pick up this list of odd ingredients which includes rice flour, non-dairy butter, soy milk, and cardamom (some sort of spice I have never heard of.).  I have exactly 7 minutes to accomplish this task.

 

I park, rush into the store and begin my search of these items.  How long can it take?  3 minutes at the most.  I don?t even bother to follow the proper store flow.  I just cut through an unused check out and speed to the flour section.  I am just about to start my search when BAM the electricity goes out.  Of course there are a few screams and groans but none as loud as the one I hear in my head.  Ah geeze, I?m working on a tight timeline.  I can?t let this stop me.  I?m about to scream ?can somebody get me an effen flashlight so I can find my rice flour? but luckily I sensor myself.  I locate my flour in the dark and head directly to the spice area.  On the way I pick up this can or butter flavor Crisco (that?s non-dairy butter?right?).  I can?t see crap in the spice section, so I take out my cell phone and shine a little light on the subject.  I find the mystery spice.  I?m almost home free.  I just have to get the soy milk.  That should be easy.  I grab it and head up to the front of the store.  I?m still on schedule to make my timeline.

 

But wait, hummm?everyone else is blindly making their way up to the front.  The power is still out and there is no way for them to check out anyone.  Gotta love those barcodes and scanning machines that all require electricity.  In fact they are still trying to pry the automatic doors open so people can actually get out.  I?m beginning to feel annoyed and panicked because I?m pretty sure I?m not going to make my schedule now.  I have my 4 little critical items in my cart but no way to get out with them.  I feel an internal meltdown is just around the corner.    

 

But wait, the words of Dr. Dan come to mind? meditate, slow down your breathing, find respite in your mind.  So guess what, I just stand there like everyone else.  I try to relax, chit-chat with the other inconvenienced shoppers and just be?because there is nothing else to be done.  I finally just relax about the whole situation.  I actually waited 30 minutes there, just doing nothing.  Ultimately the power never came back on as it was out in the entire area.  Like most of the other shoppers I ended up quietly leaving my cart full of my precious items there for the store employees to restock.  But I left a little amused, more relaxed, and the house didn?t fall apart because I was late. 

 

I?m getting better?right?   ]" />

From everything I have read from your posts, I feel that was a big step for you.  I just wanted to say I admire you for taking that step and I am happy for you.