80 replies to this topic

[Saneaj]

My hubby has been a quad for nearly 18 years now. He started out a C2 and now is considered a C5 with brainstem residuals. He was my highschool sweetheart and is the love of my life. I have been the sole caregiver as his family could not deal with his paralysis. My parents died within months of each other and my hubby's fall happened right in the middle of all my losing them. So the only support that I have is our new church that we have attended now for that past two years. The doctors tell us that he is now resistant to antibiotics along with a ton of other complications that I just don't feel like going into right now. He's now bedbound and we are unable to get nursing help because we live too far from the city. There aren't any agencies out here who handle his particular needs. So... fine... whatever... We understand that we will face this by ourselves.

I was just starting to get out into the real world again before this last thing hit us. I had gone to college online and teamed up with a partner to start our own media group. Things were going really nice. I was finally out of these four walls and my hubby was happy to kick me out...lol He always tells me that when I'm home I'm like a hellicopter, that I hover...lol. Now, I had to give it all up and come home. Which I do not hold any anger at him for this. It's not his fault that this is happening to him. I have no one like us to be able to talk with and most able bodied couples do not understand what we are going thru.

I know that I am going to lose him. I just don't know when. He's getting worse the longer that he is in bed. Please don't ask me about his condition... I just don't have the strength to go into it all and we have been dealing with that with all the different specialists that treat him. I just need for someone to understand me.... you know what I mean... My pastor is really fantastic, but really doesn't understand and they don't realize how much that hurts and frustrates. I don't want to hear how a miracle can still happen. I'm a realist and I just want my hubby's pain and suffering to be over with. I am trying to make him as comfortable as I can. I still fix myself up, do my hair and make up and such so that I still look pleasant to him. I keep the house as peaceful as I can and I stay in good spirits when I am in the room with him.

It could be weeks that we have together or months... we just don't know. He is very optimistic and says that he is going to live forever. He is such a superhero. But I'm dying inside and no one sees it. All they see is how strong I am and yada yada yada. Well honestly, I'm tired of being strong. But there is no choice. I guess that I just needed for someone to hear me...

[mcferguson]

We hear you and understand. Post anytime.

[allis53ca]

what Ferg said...we hear you and understand...glad you found this place where you are understood...you aren't alone

[Saneaj]

allis53ca, on Dec 12 2009, 09:14 PM, said:

what Ferg said...we hear you and understand...glad you found this place where you are understood...you aren't alone

Thank you

[Tetracyclone]

hard road. Keep us with you as you limp along.

[qbounce]

There are others here currently dealing with situations all the time. It couldn't hurt to get that off your chest as well. Hell, the most you may get from that is some sound advice. But I respect your privacy for leaving it out, and I can only hope that things will indeed get better for you both.

Edited by qbounce, 12 December 2009 - 11:26 PM.

[guido]

Saneaj, on Dec 12 2009, 05:32 PM, said:

But I'm dying inside and no one sees it. All they see is how strong I am and yada yada yada. Well honestly, I'm tired of being strong. But there is no choice. I guess that I just needed for someone to hear me...

You've come this far. You are amazing.

Come here when you need to vent or scream.

We're with you.

[DaveP]

My mother and I made a promise to eachother, that when ever the time came to "pull the plug", the other would be strong enough to do it. Then I had my accident but never came close to needing the plug pulled.

A couple of years ago, my father was knocked to the ground and had head injuries, and died after 6 months. My mother got weak over this period and was then diagnosed as terminal.

I had her come to live with me and refused to let my family send her to a nursing home. In her last few months, we had some great times together, even though there were so really tough times too. She got weaker but we still got her out and about, made sure she got her regular visits to her hair dresser, nice lunches, a few glasses of wine, some Port, etc.

Then the time came when she was "on her way out". There was no turning back. It was only a matter of days or maybe a couple of weeks. With the help of modern medicine, we could "prevent death", but I knew it was time for me to keep my promise to her. And I knew that was what she wanted.

I "pulled the plug" and she went to sleep. She took her last flight out and wasn't coming back.

It wasn't easy but it was the best thing to do. It was what she wanted and it prevented her for any unnecessary suffering. I am very proud that I gave her a great final few months and treasure those memories. We had some great laughs. And most of all, I'm totally at peace that I honoured her wishes and allowed her to go out peacefully and with her dignity.

Knowing what she wanted made the decision so much easier - and the memories so much better.

Enjoy your time with your husband and create the memories you want to carry with you for the rest of your days, so you can look back on these hard times with love, and smile. The hard times will fade away, and all you'll remember are the happy times. Make happy times to remember.

[Tetracyclone]

DaveP, on Dec 12 2009, 08:53 PM, said:

My mother and I made a promise to eachother, that when ever the time came to "pull the plug", the other would be strong enough to do it. Then I had my accident but never came close to needing the plug pulled.

A couple of years ago, my father was knocked to the ground and had head injuries, and died after 6 months. My mother got weak over this period and was then diagnosed as terminal.

I had her come to live with me and refused to let my family send her to a nursing home. In her last few months, we had some great times together, even though there were so really tough times too. She got weaker but we still got her out and about, made sure she got her regular visits to her hair dresser, nice lunches, a few glasses of wine, some Port, etc.

Then the time came when she was "on her way out". There was no turning back. It was only a matter of days or maybe a couple of weeks. With the help of modern medicine, we could "prevent death", but I knew it was time for me to keep my promise to her. And I knew that was what she wanted.

I "pulled the plug" and she went to sleep. She took her last flight out and wasn't coming back.

It wasn't easy but it was the best thing to do. It was what she wanted and it prevented her for any unnecessary suffering. I am very proud that I gave her a great final few months and treasure those memories. We had some great laughs. And most of all, I'm totally at peace that I honoured her wishes and allowed her to go out peacefully and with her dignity.

Knowing what she wanted made the decision so much easier - and the memories so much better.

Enjoy your time with your husband and create the memories you want to carry with you for the rest of your days, so you can look back on these hard times with love, and smile. The hard times will fade away, and all you'll remember are the happy times. Make happy times to remember.

thanks, Dave. We all face this at some point, and your story strengthens me for the event, whichever role I will be in next.

[irish]

Sweethearts like you make life better for us. thanks for sharing and our prayers and best wishes go with both of you

[Saneaj]

Thanks to all of ya'll. I really needed this today. I have been going through all of this so alone. My church family really does try, but they just don't understand. And my precious hubby keeps telling me how he is going to beat this. But every time that he says that, I die inside. It's been nearly 18 years and I have no more fight left within me. I just want this over. I know that I can say this here... because most people would not understand why I would feel like this. We are both so stinkin tired. There's virtually no sleep and I hurt... both physically and emotionally. I love him so much. If I could separate him from the sci, then things would be so much easier because I could keep him and throw the sci part out the window. I know that I will never have my hubby back the way he used to be... I came to grips with that many years ago. But I'm ready for this to be over. I'm ready for his suffering to be done. He's bedridden now and in so much pain. Congestion is settling in and the uti is running rampant now that he is antibiotic resistant. We've tried everything that there is out there to try, fought every way that we could find to fight. I've forgotten what it was like to live. Dang... after almost 18 years... I've even forgotten what it feels like to make love. There has been no real life for us all these years. It's just been a constant fight just to stay alive. And now, I'm tired. I've even been toying with notions of 'stepping out of life' myself. But I could never coward out on him like that. I love him too much.

I think the hardest part is just not knowing when... I'm all tore up inside and nothing makes this better. I look at him and at times he is so full of life. And then... there are moments where I can see him struggling. I spend as much time with him as I can, just snuggling and lovin' on him as much as his poor body will handle. His stomach is pretty torn up so I can't snuggle for more than a minute or so before it becomes torture to him. I really hate life right now. But I will cherish every moment that I have left with him. And whatever happens, happens because it is time for it to happen... not because we get impatient. I just want to clarify that especially because this is such a dark post that I'm writing.

I want to thank everyone for being here for me. I truly appreciate it...

[Quad65]

Wow, I don't know what to say except I wish there was something I or we could do to ease both your pain. The term 'hero' is tossed around all too lightly these days, but for the spouses/caregivers out there, it fits. My wife has stood by me for 31 years and I try to make her life as pleasant and unburdened as possible by doing as much as I can for myself and her.

We've talked about end-life issues and I told her if I take a bad turn and things look grim that all I want is to be made comfortable. I want to punch out quick. No heroic measures, no resuscitation. No expensive funeral. Cremate and bury as simple as possible. I will not burden her financially after I'm gone. In fact, I told her to throw a party and go on vacation; she's earned it.

Our thoughts are with you both.

[reallynewatthis]

Bless you heart and let the wonderful people here help you through this impossible time.

I understand. After eleven years together, my husband fell and is a brand new SCI, it has been 22 days. However, he has taken a severe downturn after surgery and is no longer responsive to voice, light, or pain. I have no idea what tomorrow will bring, only that I will need strength to see it through.

Please keep posting and feel free to PM me. As I have discovered during this longest night, there is always a light on in the window here.

Terri

[Maltese Cat]

Saneaj, on Dec 12 2009, 05:32 PM, said:

He is very optimistic and says that he is going to live forever. He is such a superhero. But I'm dying inside and no one sees it. All they see is how strong I am and yada yada yada. Well honestly, I'm tired of being strong. But there is no choice. I guess that I just needed for someone to hear me...

Being told you are so strong can often be the most infuriating thing in the world. You are strong because you have no choice, its be strong or fall apart in a heap in a way that helps no-one, and actually, falling apart is what you really really want to do, not being strong at all. have a look at some of the posts on this site and see how many people are fed up with being told they are 'inspirational', 'strong', or that if anyone could cope with this, it is them. When you are feeling low, it doesn't actually help to hear that someone else would not be able to cope with what you are going through. it just makes you feel that they dont really understand.

What is really important is to find some time in every day that is your own. I realise that with lack of help at home it may be difficult to leave your husband alone for long, but even five minutes breathing or meditation (or a bath, or a good cry) may make a difference. Time for you to concentrate on yourself, and re-charge. When it feels like the end is looming, then you may feel that every free minute should be spent with the person you may have to lose. But if you can take some time out for yourself then this time with him should be easier for both of you.

[Saneaj]

I appreciate everything that is being said. And you really hit home about the whole being strong thing. I absolutely hate it when people tell me how strong I am. I do this because of the love that I have for my husband. Not because I am some strong person who can deal with this. If people truly knew how I was dealing with all of this, they would be very shocked.

Today was a very yucky day for us. Things are finally settling down to where we can both rest a little. It was one thing right after another for over an hour and we have been dealing with the residuals all day. He is still so full of life. I look at him and his eyes shine back at me. It warms my heart. This is all so confusing. And it is all so very slow, which is a blessing and a curse. I'm able to spend more time with him, but then the wear and tear on us both is exhausting. But I know that somehow God will get us through this. Thank you all for being here to listen to me. Just knowing that I am not only heard but also understood means more than gold to me right now.

Sheri

[gordonr]

Saneaj, on Dec 13 2009, 03:15 AM, said:

my precious hubby keeps telling me how he is going to beat this. But every time that he says that, I die inside. It's been nearly 18 years and I have no more fight left within me. I just want this over. I know that I will never have my hubby back the way he used to be... I came to grips with that many years ago. But I'm ready for this to be over. I'm ready for his suffering to be done

THe thing is, HE doesn't seem to be ready. He is not giving up.

We don't have details of his condition, but it is amazing how long some people can survive.

If you are all tuckered out, as you appear to be, it might be better to consider getting him into a home of some kind. I know that you feel joined to him through thick and through thin, but your sense of timimg appears to be out of synch. You are ready for the end, but he is not.

For you, the end will be a chance to turn over a new page in life. For him, it is just the end. And people tend to fight that end off just as long as they can.

Gordon

[guido]

Good point. Can you get respite care for a short break?

[Saneaj]

I never looked at it like that. I guess that we are out of synch because I'm just too tired to see clearly. Thank you for pointing out to me what you did. I needed an attitude adjustment. It's just all so confusing to me right now. Sometimes he is ready to go and sometimes he fights harder than Rocky ever could...lol

We had a very bad night. He keeps having respiratory distress episodes where he can't breathe. Then when everything settles down, he tells me that he is alright and not to worry. I wanted several times to take him to the hospital last night and again this morning and he tells me no. But... God did hear my prayers.... because they were finally able to find a nursing agency to come out here and she called me a bit ago. I don't know what kind of help that I will receive but anything is better than nothing. She thinks that he may be getting pnuemonia and that he may have to be hospitalized for a few days. He is already kicking his heels at that... but I'm sure that he will listen to reason. I told him that I'm really afraid of falling asleep and not hearing when he has one of these attacks and him dying from it. So I think that is beginning to work on him a bit. And if he does go in for a few days it will give me some time to recoup and regather.

I don't want him checking out before his time. I love him so much. We basically grew up together and he is more than just a husband to me. He's my soul mate. And even though he may be in that stinkin wheelchair, he protects me and keeps me safe. He's my knight in shining armour and I know that I would be lost without him. I think that right now I'm just going through so many different emotions that I don't know what to think or even how to feel anymore. And I surely don't know what to expect. They tell me that it could be weeks, months, or possibly a year. So maybe they don't even know what they are talking about. I just know that I see him slipping. He's bedbound and miserable. But he is still in wonderful humor. That's why I love him so... The last time that we went through something like this, he was in the ER and nonresponsive. The doctors wanted to just make him comfortable until he passed. I told him that it was God's job to decide when we pass, so until God pulled the plug we were going to do eveything that we could until such time. They tried one more treatment... then he started to come around.... and the first things out of his mouth wasn't 'oh honey... I love you..." or anything like that... he looked over at the nurse and asked him if he knew why Tigger had stuck his head in the toilet... the nurse just sort of looked at him because he was in shock that he was responding to the treatment so quickly... then Billy told him it was because Tigger was looker for Pooh...lol That sort of sums up who my hubby is.

So hopefully within the next few hours I will have some help and he will be on his way to the hospital for treatment.

[gordonr]

That all sounds really good.

-G

[Saneaj]

Strange day.... we got mixed news from the nurse. But we are optimistic. No other choice cuz I don't have the strength to cry... ya know what I mean...

We had called our church for prayer just before the nurse arrived. My hubby's lungs started to clear... he's thinking miracle. So am I. So he didn't have to go to hospital. His O2 stats climbed and the distress waned. So that was good. We will not be getting any respit as we don't qualify due to me living here. Medicare feels that if there is someone in the house who can take care of them, they don't have to. But we will get skilled visits 3 times a week. They also want him up in his chair for 2 hours a day to help stave off pnuemonia. His service dog, Jenny, was so excited that he was up in his chair that she did what we call the wild Indian! Which is where she runs as fast as she can back and forth through the house. She was all smiles. It really blessed us.

They are going to try a different approach with handling all of these issues that we are facing. She said that she can't promise anything, but it gave him a bucket full of hope and renewed his strength. So that helped. He is now FINALLY sleeping! We haven't had any sleep for 5 days now. I am so overly tired that I have already taken enough stuff to put a horse down and I still can't unwind. But at least he is finally sleeping. No one knows when any of this is supposed to end. We hear different things from different doctors. That is what is so hard, frustrating, and wearisome. So we just go on... enjoying each day that we can still share together with laughter and joy.

I was just texted by someone from our church. Word is getting around about my hubby's condition and this guy was offering to come over and sit with him while I was able to go and get some rest or out of the house or what ever I wanted to do. I'm in tears right now. We've never had a church family like the one we have now. I now believe that God is hearing even my pain...

[Izziwhizzi]

A lot of tetras die from pneumonia and chest infections. But it doesn't mean that you or your husband should wait for death to arrive just because he has a chest infection.

Has he had any antibiotics, especially iv ones?

My 70 year old mother, although not spinally injured (thats me), is currently terminally ill with cancer. She is however undergoing chemo and that knocked out her immune system. She has just spent 6 weeks in hospital under barrier nursing with 2 really bad bouts of pneumonia and heart failure.

She has pulled through even though had iv antibiotics for 5 of the 6 weeks, had lots of time with full mask oxygen, and probably in 4 of the 6 weeks I left the hospital not knowing if she could possibly make it through the night. But she has, and we are planning a wonderful Christmas together even though we know it will be our last.

What I am saying is that it is possible to get rid of chest infections and don't give up on your husband. It sounds like he is not wanting to give up on you or life. Just because we are tetras we shouldn't be given up on, just like my terminally ill Mother old Mum wasn't.

I xx

[Saneaj]

I am NOT giving up on my husband. And yes... we are exhausting ALL possible means of ANYTHING that can help him. We are going in tomorrow for yet another procedure. And it's more than just a simple chest infection that we are dealing with... it's multiple issues... Sometimes I may seem a little dark.... but daggum! It's because I get NO SLEEP... I truly love my hubby and am not by ANY MEANS giving up on him!

[gordonr]

Saneaj, on Dec 15 2009, 03:12 AM, said:

I was just texted by someone from our church. Word is getting around about my hubby's condition and this guy was offering to come over and sit with him while I was able to go and get some rest or out of the house or what ever I wanted to do. I'm in tears right now. We've never had a church family like the one we have now. I now believe that God is hearing even my pain...

That's great. This kind of practical help is what you need. Keep getting the word out. Let people know. And you will be on the core church "To Do" list. And that will work miracles, no matter how things work out in the end.

All the Best,

Gordon

[Saneaj]

They just told us that he now has C-Dif from all the anitbiotics... I feel like we are on a roller coaster from hell...

[Tetracyclone]

Saneaj, on Dec 22 2009, 01:59 PM, said:

They just told us that he now has C-Dif from all the anitbiotics... I feel like we are on a roller coaster from hell...

Where is the C-Dif infection?

Been there with my Dad, 88, still with us 2.5 years later.

[davjed]

Seems like things just keep building on top of each other. Had C-dif myself a few years ago. Thought I would never stop squirting blood. Buttermilk, yogurt, probiotics plus antibiotics for C-dif and maybe lomotil to quiet things down. I feel for you both..........praying is the best I can do..........keep your faith

[Scribbler]

It would be nice if you took 5 minutes to fill out your profile. Where you are; just basic stuff.

[greybeard]

Scribbler, on Dec 23 2009, 08:25 AM, said:

It would be nice if you took 5 minutes to fill out your profile. Where you are; just basic stuff.

Here here. The same goes for lots of new members.

[SandieT]

Who care's for the carers.........We all do.
If someone is offering you help at this very difficult time. Take it. If you end up becoming ill because of everything you are doing for him, you will be no help to him.
Whilst his body may not be working. He obviously has a strong heart to keep fighting on.
Thinking of you both.

[Saneaj]

I don't mean to sound crass... but you reeeeaaallllyyy need to hear me when I say that I have NO ONE to help me. My parents died long ago and I have no family even remotely close to me. My hubby's family all live states away from us and care nothing for him! When he had his accident, his mother and brother came to me and told me to sign a DNR. When I did not, they said that since I was soooo selfish in keeping him alive like this that it was my punishment to go through this alone. And they have stuck to that promise all these years. I do my utter best to keep him taken care of along with myself. And the reason that I don't take '5 minutes' to fill out my info is because I deal in IT Media all day long in between caring for my hubby and hate being an end user of things that I help create. Just a pet peeve of mine. I like to be invisible for those of you out there who can understand that. The one person who offered to come help, it fell thru. He's also taking care of his wife's granny. So I can't be upset with him. It was very gracious of him to offer.

And I thought that this part of the forum was for care givers... so that we can vent safely without offending people with sci's.... Evidentally I thought wrong...

People just don't get it... you can come to a point where you are so stinkin tired that all you can think about is finding that perfect ledge. You know.. .the one that keeps calling your name everytime you close your eyes. The one that beckons you to come out to it's edge and woos you to take that one last step. You get to a point where all you want is to feel the wind blow through your hair as you race towards earth's embrace. I'm hurting and let me tell you... no one hears me. Everyone keeps telling me how stinkin strong I am. Well... I don't want to hear that anymore. I'm done. So after I post this reply.... whomever is the administrator of this forum, please just delete me out of your database...k I should never have exposed my true feelings to this forum to begin with. I am very sorry now that I did....