It is very obvious how SCI steals and robs from the person that is suffering from the injury. That is abundantly clear to me from watching my husband. Sometimes it’s the big things and other times maybe a little thing. My heart breaks for him because I understand how difficult this is.
I think from my side it isn’t quite as obvious to the world what has been stolen from me. The biggest thing I am thinking of is freedom to pursue my life as a daughter, sister, and even a mother. My first priority is always my husband because his needs are the greatest. Unless I have a hired nurse here, I am typically SOL. Most family members are too nervous to stay with him for any length of time, and they have flat out told me they are uncomfortable learning his personal care. That leaves me, me, and me to care for him (plus our hired nurses).
This scenario is especially difficult as my parents are aging. There are so many times when I want to help them, be with them…but I just can’t. It’s shower night, bp morning, no nurse for the next 3 days or a host of other situations that leaves me stuck at home.
My mother is 75 and my father 82, and I am starting to feel that my husband’s SCI is robbing me from the last years of their lives.
My father was in renal failure for many years. He was on dialysis but was also on the transplant list. One morning, what I never thought would happen, happened. I remember that morning a few years ago when my mom called me at 5:30 a.m. to tell me that they found a kidney for my dad and they were off to the hospital for a transplant. Her voice was shaking, and I knew she needed me but all I could say was…”I’ll be there in a few hours when the nurse comes.” That day I hated my husband’s SCI. My parents needed me more at that moment, but I was stuck. Nobody would come and stay with him and all I could do was wait until his nurse showed.
There have been many other instances where this type of thing has happened. I miss the critical family events because of my responsibilities here at home. Yes it is another guilt trip but also a longing for my family that I dearly love. One day I was so frustrated that I couldn’t help out with some family crisis that I actually told my mom that she and my dad had better plan on dying on a Monday – Thursday between 8:30 a.m. and 3:30 p.m. or they could just count me out. That’s how I feel sometimes. It’s like being Cinderella everyday. My coach turns into a pumpkin every day at 3:30 p.m., and I’m back on duty. I can always get away from my paying job. It’s this other job at home that has me prisoner.
Currently, my brother is facing a crisis of monumental proportion. I wish I could do more, but this damn SCI gig is once again holding me hostage.
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?
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.
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.
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.
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!!!)
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.
