Good Afternoon,

I read your blog and I know an individual who can relate to your situation and she has been out of paralysis because of the nutritional supplements she was taking.  This is not a cure but it helped her a lot in so many ways.  Please send me more information about your wife's condition, medicines that she's taking, and maybe I can have a health and nutrition specialist talk to you and give you some advices just like what she did to this individual.

Hope everything goes well

Camille C.

Hi, my suggestion to you is to stop being the caregiver and hire a care giver a few hours aweek for her intimate needs.  I'm not saying I know her needs, but i figure after her hygiene needs and getting dressed, which is intimate, the rest is normal people stuff.  You can do thenormal people stuff with her and let someone else do the hygiene and this way you could feel like a husband, not a caretaker/husband/father/breadwinner/supporter of the whole family and everything is on myshulders at all times!  Gosh, anybody would crash and burn.  Releive yourelf of at least one duty.  The care taker part.

sorry i was general and vague about my whole situation. was not sure i would get any response. so before my wifes paralysis we owned a dairy farm which she was a active part of and i worked off the farm to help support our income and have medical insurance. I am a dairy nutritionist which is basically helping other farmers formulate diets for cows to maximize milk yield. I have been able to keep the farm going and still work off the farm 20 hours a week to keep our medical insurance.  i borrowed a large amount of money to make the 100 year old farm house accessible for the wheelchair and to purchase a used van to transport her. So we are bankrupt on paper, but i somehow manage to keep things going and pay most of the bills every month. Her paralysis is T1 . after the initial aortic repair it dissected farther down comprimising the blood flow to the spinal column. she suffers from depression and severe burning nerve pain.  She has been doing better this summer as the weather is nice , but typically in the winter she will get out of bed for a shower and then return back to bed . sleeps a lot. I did fight to get help and have 60 hours a week of aids. But when they dont show up and when they are not here i take care of her. So i didnt mean to whine or be selfish , but i have not had a vacation or even a day off from work in three plus years. I learn something every day, thought that other peoples experiences  i could draw from, and possibly someone can gain from my experiences. I find it helpful to talk.  ty for the replies.

Hi Darrin, I wish my husband cared for me in any aspect,   I certainly would'nt want to be a
second job.  so gotten well enough not to need  him to be one.  I just want to be treated
like a wife.

i found a link to another website ..the well spouse association. other spouses who are caregivers experience the same feelings...the loss of intimacy, lack of normalcy, loss of people in their lives who used to be friends, lack of time for their selves and feeling guilty for wanting that, working 2 jobs because of the financial strain, feeling like a single parent, the depression, everyone asking how your wife is and not seeming concerned about my well being,  i feel like i have aged 10 years in the last 3.   It is hard, I wish no one had to go through  this.  I just pray i stay healthy so i can continue to take care of my wife and the kids financially, but i think the caregivers health is too often overlooked, both mentally and physically.

i try hard to still be a good husband and father. wish i could do more and i didnt have the financial shortfalls so i could buy more to help her, i want her to be a part of our lives.. laying in bed isnt .  the weather this summer has her up more, hope it carries into the fall and winter. i put up a small pool bought from walmart for the kids and wife. I built my own hoyer lift to lift her out of chair and swivel over edge of pool and lower her in. I  have pictures and am willing to share with anyone interested. had roughly 600 dollars of materials . one day of time welding and digging hole and setting in concrete.  it is easy to operate and the aids are able to get her in when i am working and not here.

Thanks Stephen. I am still trying to accept the new life , and maybe it is time to let go of some of the old. The farm is physically demanding , then add working off the farm , running the kids to school activities, and keeping the house picked up, and caring for her when there are no aids here does wear me down mentally and physically. I am sure if thing were better financially , it would make  everything easier. We have a old van that is falling apart, she cannot drive as it has no hand controls on this one. No standing frame or bike, just the pool , but here in ny there are only a limited amount of days that can be used. She gets no extra therapy, insurance wont pay for it and am struggling to pay all the other bills. Insurance says it is not medically neccesary. I am sure it would help, especially just being able to socialize with other people. I am doing the best i can, i hope it is enough , but i feel it isnt  and wish i could do more. That is the part that is hardest for me , feeling inadequate, it is my fault that i cant do more, that somehow i should be providing for her better. All I have ever done is work with dairy cattle my whole adult life, it is what i know and love, and for the last 8 years have owned our own dairy farm, but it is not a job that you make millions of dollars of profit every year  unfortunately.      thanks again for the reply, i will always miss everything  she used to do and we did together , but i am continuing to adjust to this new life  and move forward every day.     Darrin

what is the name of that website?

I completly understand. I am done with milking cows for the day and my wife is sound asleep. Was in pain and up all night so she has slept much of the day today. I am exhausted from working today, but it would still be nice to come in and have someone to talk to and share my life with. But this is a regular thing, i will shower and fix myself something to eat and sit here feeling lonely.  The other website is the well spouse association. Thanks for the reply its nice to know i am not the only person in the world doing this which is the way it feels sometimes.

Weber;s nurse-
Not sure how to answer your issues. It seems to me that you knew what you were getting into. I don't mean that in an accusing way. But it seems to me that now all you are doing is saving money. My suggestion (as you have seen ne state before in other responses) is that you hire somebody to take your place. It's hard to be both caregiver and amorous partner. And as for the kids- get them to pitch in. Jeez- they've got a lot more energy than you do, and they are living off your home situation. Let them do a little to pay for their keep. It will make them better, and more understanding of others for the hard work and the things they get to experience. If they don't want to participate in the caregiving, then they should learn to cook and clean, and mow.

Darrin-
\
Gosh, I fel your pain. When Cathy is ill, all of us pay the price. Can't tell yo uthe number of sleepless nights that has cost me. I travel a bit with my job, so I get to escape when I need to.

You need a friend. Not sure where you'll find that, but somebody who'll stop by every now and then and see how you're doing. Join a church maybe? Church ladies just love to help. And you can find a good man friend to share your troubles. Not sure what we'd have done in the early going without them. As for the work- well, life changes. If you get a new job, life changes. If you move to a new town life changes. And you adapt. Humans are good that way. We simply adapt. Learn to like and even love your new situation, and it will change your outlook. Read some of the writings of the apostle Paul.

You should be looking into the pain thing. My wife takes only one drug, and in small amounts. Amitriptylin is an anxiety drug or something like that, when used in large doses. Used in small doses (25mg a night) it seems to cure her neurogenic pain. Prior to using it, she would feel like her whole body was one big funny bone- buzzing with pain. Regular pain killers DO NOT work, and only make thngs worse and have bad side effects. Also, lack of exercise would get her feeling lots of neurogenic pain. It was kind of a trade-off. If she didn't exercise, she would get pain. If she got pain, she didn't feel like exercising. Pain makes it tough on everybody. Only a doctor can tell you what to do properly. Suggest you find a good PM&R deoctor. It would be worth traveling to see one once a month. That's how often we see one. We also take her to a gym that has equipment to exercise with.

Last thing I'd tell you is to stop being a guy and trying to solve all her problems. That's what we do best as guys- we solve problems by doing things. I'm the worst at that. Because I'm an engineer- I'm forever trying to fix things for my wife. And I've learned that sometimes she doesn't want me doing that- she just wants somebody to listen. Still not good at that, but I'm trying.

And try to get some time to yourself. Take up some form of exercise, or get a motorcycle, or join a bowling league. play some golf, whatever- get out of the house every now and then. The release is necessary. If you are like me, you had a lot of time to just be alone prior to the injury. Now if you do any time alone, you feel guilty. Get over that. I did, and I found out that when I returned, my wife was just as good as when I left and somebody else had taken care of her, or she had survived. You need time alone. She needs time alone too. Keep on keeping on, my friend.

thanks Stephen.  I have thought for a long time she is on way to many meds, but we have been to three different hospitals here in ny and the all advise the same things, so i do what they tell me. She is still very depressed and i agree that exercise is the key for both the pain and depression, just have to coinvince her of that and that is a huge struggle. The boys are a great help to me here, especially my oldest. as you say we all suffer when mom is not feeling good. The boys have been on vacation with Kerrys parents, well deserved for the boys. I miss them and can not wait for them to get back.    Thanks again   Darrin.

I know that my life would be easier without the farm, but as i said before it is all i know and have ever done my whole adult life. I love it , just is a lot with everything else that has happened. the only way out of the farm is bankruptcy, and huge tax implacations even with that, so financially at this point ,life would be worse if i get rid of the farm, plus i am able to cover when aids are sick, or quit, or whatever. wouldnt be able to do that if i go back to work full time.  So i keep moving forward , one step at a time, mentally i am just not ready to give up on all my dreams in life .

Knowing what I was getting into and then actually living it are completely different avenues.  I guesss because I'm so independent and since I was a single mom, I was used to being the "man" and "woman" of my own life.  I have the kids help as much as they can, really.  I am a biolar, borderline personality, OCD, and I have anxiety issues.  Not to mention the lifetime of abuse that I suffered at the hands of my own stepfather, bad relationships and just generally I have had a mostly traumatic life.  I don't think my husband, who went to school and has his bachelor's degree in human services, specifically in psychology prepared him for living with me anymore than my nursing experience taking care of quads, prepared him for living with the issues that I have.  As far as the saving money by having me do some or most of his medical care goes, I recently changed jobs (in April) and I don't have the time to spread myself any thinner, looking to get a part time job doing hair, to be able to provide him with the care I used to be able to provide.  He has medicare and medicaid for insurance and they are telling him that because of budget cuts in those areas prevent them from having someone to come do the things that I do.  It's not like we can afford to pay out of our pocket at this time to hire someone to take my place doing the things I do.  I make decent money, but just prior to meeting him, I bought my own house, which is no where near accessible to him so we have to worry about my house if the renters don't pay or trash my house, which has just recently happened.  I'm not complaining and I just joined this site 2 days ago, I don't have a lot of free time, to put it mildly, so I didn't actually have a chance to read many posts when I signed up.  I just want validation, I want someone to understand that I have needs to and I'm not invisible just because I'm able bodied.  I'm not trying to be argumentative in the least, but I feel like no one who doesn't live this lifestyle could possibly understand the frustration that I feel at times.  That would be the reason I joined this group.  Please don't think that I don't appreciate the reply but I felt kind of like you were scolding me with your reply.  I know that I belong exactly where I am and I have no plans on leaving even at the toughest of times, I just am looking for ways to either figure things out or just a place to vent. 

Darrin-

ugh- if your doctor is just supplying meds, then you need to get a new doctor. We live in Austin, Texas, and we have been through three. One doctor had got her on Baclofin for spasms (her current doctor encourages spasms so long as they aren't outrageously troublesome). I found out that if you miss a dose, or go off of it too quickly you can have siezures and die. Also, I discovered another side effect is that it makes you depressed. So, I was discussing this depression with her doctor, and he told me he could give us something else that would counteract that. We dumped him right there in his office. We have Cathy (c5/6) essentially off all meds except the Amitriptylin at night, and she is better off. She does take quite a few vitamins and such to enhance her mineral balance.

Learn one thing quickly- doctors are good in emergency situtations, but they do not know as much about your health as you do. I have had to sign several "Against Medical Advice" forms over the past 8 years, and in some cases, it saved us a massive amount of headaches. Don't get me wrong- if you get a good doctor, they encourage a lot of self-evaluation, and personal work to get better. Bad doctors just give you pills. And they will ALL do it, because that is the standard practice. Always remember that--- some doctors biggest concern is whether or not you will take them to court, not whether or not it is the right thing to do.

Google is a marvelous tool. Look up the drugs your wife is taking. See the side effects. Question whether they are doing anything good or just a crutch. If they are just a crutch, then get rid of them, and get her cleaned up. Argue with the doctor about the NECESSITY of taking them. There may be some that are necessary, and those can be found by simply doing lots of bloood work, and comparing. For a while, Cahty was on meds for hypothyroid (common among SCI), but has since removed that as the blood work showed the drugs did very little, and she was able to take care of the problem with vitamin supplements.

Experiment around, and go find a good PM&R doctor. Even if you have to go to NYC. New York has some famous Rehab centers. Look them up and go there. It's worth the trouble. Most normal doctors look at my wife, and don't know what to do. They are almost afraid to touch her for fear she will break. FInd one that is fearless, and works with you. Now that is something a guy can fix! hah.

Steve

everything you say makes sense, but again it all comes back to financial, we have been to what was supposed to be the best pain management in the state  (syracuse)  and there was nothing different they could do. nyc is a long drive in a van that is not in good shape, and if it breaks down (its a 2000) then  i have a bigger problem to deal with. Everything comes down to what insurance, medicare, medicaid will pay for. We can not afford anything extra out of pocket. That is the reality.

we all need a break and to vent , it is hard , I understand  , stay strong , that is why i am here is to try to gain strength from others and there experiences

Darrin, I am so sorry about your wife. My heart also goes out to you and your boys. Your story brought tears to my eyes because we have alot in common. My daughter who is now 38 and has two boys has been paralyzed 3 1/2 years also. I can't even imagine how you are working 2 jobs and taking care of your wife, kids and househould.Hats off to you. I had to quit my jobs and even though I am home everyday, I am exhausted. Do you have help? I don't know what state you are in, but I am in Calif and there is a program called IHSS THAT PAYS FOR CAREGIVER HELP. I think it is nationwide. You absolutely MUST get a break every now and then.If you have caregivers for your wife, employed one of them for a weekend to get away or call a caregiver agency for respite care. Just getting away for a couple of hours is not enough. you need 2 or 3 days of no stress rest. Leave the kids home with caregiver to make sure things go ok. I do this at least every 6 months. Yon need this. How many times have you heard this: You gotta take care of yourself in order to take care of your family.

Linda,  I do have help here in ny. disability home waiver program. aids are paid through rcil ( who is paid by medicaid) Have 2 full time, one for the week and one for the weekends, 2 to fill in for sick days,  but today weekend called in sick and no one could fill in. So i can not plan anything ever, as this happens more often than it should. The kids cant do all her bowel care and health care , and it would be unfair to ask teenage boys to do that. So i get through each day. Just lonely sometimes, ok most of the time lol... But i continue to try to focus on all the good in my life, it is just hard to see sometimes. thank you  , your daughter is lucky to have you to help, wish my family or my wifes family would offer to help,( i am sure my mother would be here to help but we lost her to pneumonia 10 years ago) but we will be 42 this fall and our parents are in their late 60s so it is unfair of me to think they should. god bless you and your daughter and family.     Darrin

Darrin- Just a side note. We now have three caregivers. All are capable of doing any of the time and just want partial hours. My first two years we had only one and I had to take sick days and all of my holidays to fill in when she didn't show. Now they are instructed to contact each other when they cannot show. It puts the responsibility back on them and gives me a break. They work out the schedule. We've actually taken vacations together. Oh- and we sometimes take a caregiver when we vacation. They like the break too.

Stephen, hopefully someday i can be that lucky. thats why i work part time off the farm, i set my own work schedule, so i can cover when no one shows up. i get up at 3:30 am  so barn chores and milking is done by 8 am.  aids work 9-5 during week and 20 hours on weekends is available but they seldom work the full 20.  i wait to make sure someone is here , then work 9-2 off the farm.  then chores in barn again from 3-7 pm.   so when they dont show up i take care of her in between  taking care of the farm  and just make up the hours when they are here. the off farm employer has been really good and very understanding.    darrin

Nurse Weber- sorry if I came off as a jerk. Not intended. Typical man- I want to solve it, not listen. So, since I've proven to be bad at that, let me see if I can fix it some. There are a couple of other forums you should look into. One is the care cure forum sponsored by Rutgers. Awesome bit of information and plenty of helpful people including professional forum moderators who are doctors. Lost of different categories to look into. See it at Sci.rutgers.edu/forum/forumdisplay.php?f=3 The other is the yahoo caregiver forum. Just people like you and me. I haven't been on it in awhile because I was getting too much amateur psychological advice. Kind of like I have been guilty of? Anyway, lots of listeners there and good to share war stories. Http://Health.groups.yahoo.com/group/Scic/ In addition that forum carries lists of the various agencies in each state who offer help beyond insurance/Medicare/Medicaid. For instance in Texas there is a group called Department of Assistive and Rehabilitative Services (DARS). They are funded from traffic tickets 50% and matching state funds. And do stuff just for the things insurance won't cover. We have received a lot of help from them. Equipment and services both. Find the equivalent in your state. Sorry again for sounding judgmental. Good luck and God bless in your journey. Steve

I wanted to read  this column to get some perspective from the husband's side. My husband is my care-giver. I am using exercise to fight complete paralysis. I have injury at every joint in my spine. I can't sit, walk or stand for long. I mostly lay in bed & keep moving from my toes up. Sometimes I can't sleep at night & I sleep all day. I know it is lonesome for my husband who is a very quiet person. He has always had to have his quiet time in the mornings to do his crossword puzzle. Even when he was working he would leave early to make coffee & do his crossword puzzle before work. Now he goes to get the paper, goes to Wal-Mart for anything we might need, comes in to check on me, then goes out to his car to do the cross-word puzzle. He just needs time by himself. He comes always makes sure I have my medicine & breakfast in the am & that I have my cell phone right with me. He stays in the house during the middle of the day. Then about 3 pm he goes to a Vietnam Buddy's house. He has only recently started opening up about his Nam experiences. His nerves have gotten worse and the fact that the expenses keep getting higher have not helped. His blood-pressure has been as much a part of our relationship problems so he doesn't blame me solely, but it has been a problem as far as his feelings I am sure.  He plays bass guitar & Sunday afternoons he goes to play for Open Mic with Dave & Dave (see FB site). I sing & it used to be something we did together but it has been some time since I have felt like going. I understand that he needs to get away and have time for himself and it gives me a goal to get better to be able to go with him. I have been asked to sing for Bay Fest in October & I have started practicing. Please pray for me that I will be able. He will play on Friday afternoon. I will play the same stage on Sunday afternoon with only a piano back up. We do completely different types of music. Music helps with my pain & to ward off depression. It produces endorphines that have a physical affect on the brain. I sing the "Joy, Joy, Joy" and can't help but smile or "Song Sung Blue." Thanks for letting me see the other side.
Donna Newell, Mobile, AL