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Something I’ve Never Talked About

JackieP

Hello people! Hope your day is going great. Ready for Thanksgiving? Those that are celebrating it tomorrow, I hope it’s stress free and fun-filled!

Today, I’m going in a different direction with my blog. First, let me state, I am NOT looking for sympathy. I talk about my past sometimes, about abuse, about my ex the narc, about family and some issues I have with them. I very rarely talk about my life in the here and now.

I do talk about ME, but not about my life here, or my husband or anything that is going on at home. Some know my story, most don’t. I’m actually a pretty private person. So why have I decided to let some of my story known? Because I need help. I need to hear from some other people who might be going through some of what I am going through and how to cope during the hard times.

Let me explain.

caregiver stress

I’m from the states. I came to Canada close to 14 years ago when I struck up a friendship with my now husband online at a gaming site. We talked for hours on the phone and online. So I decided to take holidays from my job for a couple of weeks and go to Canada to meet him in person. To make that long story short, I came, I met, things happened, I stayed, we got married.

My husband’s health had always been good, except for his back. At odd times and it seemed for no good reason his back would go out and he’d be in terrible pain and could hardly stand up straight. He’d take a few days off work and lay on the couch and his back would get better. Till one time it didn’t get better.

That was a little more than 2 years ago. He bent over to lift an empty bucket and his back went out. We thought it would be like the last number of times, he would rest on the couch for a few days and his back would be better. Didn’t happen. It ended up he was off work for 8 months while the doctors tried to figure out what was wrong. Good thing we had insurance from his work place to help us make it through.

After months and months of doctors visits and tests and x-rays, they came back with his prognosis. Spurs at several places on the spine and arthritis of the spine. Inoperable because of the spurs being so many along the spine, of course, for the arthritis there is no cure. Double whammy.

So we talked things through and he decided he would try to go back to work as he had 5 more years before he could retire with full benefits. He tried to go back to work, but between fighting the insurance company and his workplace for the right to go back to work he developed anxiety attacks that would land him in the emergency room.

Finally, he was able to go back to work full-time doing the job he had been doing for 35 years. He lasted 3 months. His back and the pain that came with it just wouldn’t let him do it. So he opted to take early retirement, even though we couldn’t afford it. We had no choice. There was no way he could work. So I became his caretaker.

Our marriage was rocky years before he had to quit his job. In fact, it was so rocky I had thought seriously of leaving and going back to the states. Again, let me stress I am not saying this for sympathy, it’s just bare, cold facts. Period.

Suddenly our roles were reversed. I was his caretaker, I became the leaning post. Things financially became difficult. More than difficult. He lost the house we were living in, his house for the past 20 years. He loved that house. The mortgage was something we just couldn’t handle anymore. We were behind in everything, barely hanging on. We lost it all. The house, his credit, everything. He had to file bankruptcy as the house and bills were in his name and were his before we got married.

We had barely enough money left to buy a 30-year-old mobile home. He fought me every step of the way too. But he had to face reality. We needed a roof over our heads and this was the only way. We bought the mobile home, at least we had a home that no one could take from us. But it seemed to be the last straw for him so to speak, he pretty much gave up. Also, right after we moved he fell down some steps outside and injured his back even more.

Now, he is on 2 super strong pain medications, plus sleeping pills. He can barely walk or function. He is almost bedridden. In two short years things went from him working every day to him being disabled with no chance of it getting better. In fact, the doctors have told us it will just get worse.

Here is where I need help. It’s humbling to admit to it. I’ve always been strong when I needed it. Now, I’m not so sure.

How does one cope? How does a person find that strength? That patience?

It is down to me doing almost everything now. We have a friend that comes over and helps with things I can’t do, thank goodness for friends. But, I find myself losing patience sometimes with my husband. Maybe it’s because he’s given up. I don’t know. There is no way I would leave him now, he needs me and I just couldn’t leave knowing he is in the shape he is. We have a relationship most wouldn’t understand, but we do, that’s all that counts.

I know a lot of what he does is because of the medications. And that he drinks. He does weird things. I have to watch him all the time. He leaves the water running in the bathroom, he leaves the portable heater going, he does other strange things.

Yesterday I lost my temper. It’s not something I’m proud of. It happened.

So my questions are…...Are there readers who are caregivers? How do you cope? How to you keep your patience with trying days? Is there a trick to this? What am I doing wrong? Am I doing anything right?

I could go on and on, but the bottom line is, my husband is completely disabled, on strong meds, drinks. I’m doing the best I can, I think, with what we have. We are trying to find help, but we fall into that middle ground, too young to qualify for a lot of government help, too old for other things that might help. I can’t go to work, as I can’t leave him alone. Plus, I have a few health issues of my own.

I am not too proud to ask for help, nor too stupid to do so. Anyone with any suggestions? Thanks from the bottom of my heart.

38 thoughts on “Something I’ve Never Talked About”

  1. I know you will get some sound advice from others on here that have been in similar situations. Until then, all I have are ((hugs)) and to remind you that you know where you can find me if you ever need to vent or a distraction, even if it’s just for a few minutes. ❤

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  2. Damn. I’ve never actually been a full time care giver, but when Josh and I got together he was an alcoholic and even though he could function, he was a hot mess. And when my dad came home to die I helped my mom a bit, but we knew his time was really short. So no, I’ve got nothing other than to say, don’t forget to take care of you. If you don’t there’s no way in hell you can take care of him.

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    1. Thank you. He doesn’t drink as much as he used to, still too much with the strong pain meds, but it is what it is. I do try to take care of myself, that’s why I’m on here. My friends on here take me away from things for a bit.

      Liked by 1 person

  3. Oh Jackie..I had no idea.
    As you know, I struggle myself not to give up…as your husband has. It makes it that much harder on T to take care of me and the house.
    You need to know that you are doing your best…I can only imagine how difficult it is for you. You are loved by many here in blogworld…reaching out is important, it isn’t whining…you are not alone, not ever. I wish I could take it away for you.

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    1. Thank you Mer, you’re comment and others reaching out made me cry, and I’m not a crier.
      I get tired, yeah, and it’s hard when I hurt too, but I”m much better off then the husband, so I do what I can. Usually I don’t lose my temper, but last night I did and then felt bad. Maybe someone has some experience with this and can offer some good advice, if not I will manage. That’s what I do, manage.
      But bloggers like you and others makes things easier knowing you are out there for me if I need you.

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      1. I hope that someone who can help you better finds you. Managing is difficult. And we all get angry and lash out…every damn one of us.
        If you ever do need anything, I am here…just watch out for the feathers. x

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  4. I’m so sorry to hear about your pain. I have not been in a caretaker role, so I can’t offer any specific advice. I do know there are support groups out there, though such as AlAnon for spouses of alcoholics. I know that his drinking is not the main thing you mentioned. However, the main point of these groups is not the specific problem, but the idea that you have to learn how to take care of yourself in very stressful situations. I would advise getting into some kind of group. The main thing,as someone already said, is to make sure to take care of yourself as well as him.

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  5. I have been in your situation. My ex-husband had an injury that left him disabled and eventually cost him his career. I became his carer. Ironically, he saw it as changes in me that prompted him to leave me ten years later, rather than changes in him that meant I had to change for us both to survive. By that I mean that he grew to resent the fact that I had to work longer hours, that I had to take care of our finances, that I had to look after the children by myself, that I had to care for him. By me becoming more capable, his own drop in capabilities stared him in the face. I became a reminder of what he had lost. Also, he wanted me to be how I was before his injury which was calmer, full-of-life and with more time to fuss over him (ie ‘fuss’ as opposed to ‘care’). So there was this triple whammy. I had to become the one who did everything by working more etc, I had to care for him every day, and I had to suffer his growing and constant verbal disrespectful attacks on me. Still, I kept coping and trudging and caring for him and putting him first all the time. I would never have left him. I did the best that I could. Sometimes I look back. I remember days when I ‘let-down’ and feel guilty that I could not have been 100% kind to him 100% of the time, even though he was rarely kind to me. Then I remember that I am not a machine. I am human. When I beat myself up, it is then that I remember that I was doing the best that I could do and be, at the time, in the situation that I was in; and that is all anyone can ever do.
    Take care, and if you need to ‘talk’ about this further, I am here to help in any way that I can.

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    1. Thank you so much Elizabeth. It makes me feel a bit better knowing someone else had to do this and cope and it’s human to lose my temper sometimes. I will keep in mine your very kind offer to talk some more about this. You just might hear from me. Hugs!

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  6. Jackie, since you asked for advice I’ll give what I can. First of all, I think you should do whatever you can to get him to stop drinking completely. It sounds like he’s already in bad shape and alcohol will only exacerbate his issues – it will interact badly with his pain meds, and also, alcohol is a depressant.

    I would also suggest that you should seek some counseling for yourself – and also for your husband. There are places in the US where a therapist will come to your house if you are unable to leave the house. And there are support groups for wives and caregivers of people with these problems.

    There are people out there who can help you, but you have to do the work to find them, and sometimes that is hard work.

    Good luck. I also think you should continue to be candid about this situation on your blog – like you said, blog friends give you comfort and you need it. We are here to support each other!

    I’ll be thinking of you this Thanksgiving, and hoping you find some light in the darkness.

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    1. One of the reasons I lose patience is because he refuses to help himself. The drs and I have both asked him to stop drinking and smoking, he refuses to do either. He also has COPD. We can only do so much, if he doesn’t want to quit we can’t force him.
      Here in Canada I haven’t been able to find someone to come to the house. He won’t go to a therapist. I know there are support groups, but again I can’t leave him alone. His kids and family won’t help. They have families of their own. I have been trying to get help for the past year and I have gotten some. I have been in talks with our family doctor. He has to recommend us to specialist or therapists for the cost to be covered. He hasn’t yet for a therapist. I will keep plugging away at things, but I know he won’t stop right now. So I do what I can. thank you for your advice, I appreciate it. I love this blogging community because it is always willing to help when they can.

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      1. Is it possible to stop supplying him with cigs and booze? It doesn’t sound like he can get to the store, maybe he needs a little tough love?

        I would keep searching for assistance. Contact your legislators even, if you can’t seem to find help, help is (in my experience) always out there.

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        1. I never buy him his cigs and beer. That I made clear years ago, even before he got so sick. But, he does manage to go get them himself (about all he does) or if he doesn’t feel like he can he calls a friend and they bring them to him. If I try to tell the friend not to do it, it just ends up a big fight, and I just get tired of the fights so I let it be. It’s hard to explain without someone going through it. But I understand what you are saying, I try, but he has his ways to go around me.

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      2. Also, do you or your husband have any family around who can come help and be with him for some time that you can get away and do something for yourself?

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  7. Jackie, my heart goes out to you. You’ve already received plenty of good advice and it seems you are working to build a support system around you, keep at it until you get the help you need, even if it is a neighbor who will join you for coffee each morning, or to sit while you have an hour to yourself out of the house. Just getting out of the house will help you to deal with the situation.

    I give you a lot of credit, I can’t do it. I’ve mentioned my ex a few times. He left me when I was 24 and had just learned I was pregnant, he wasn’t ready. Then when we were 40 we formed a friendship and decided to try to work something out. As I have muscular dystrophy and he was diagnosed as bi-polar and schizophrenic he thought we could help each other and should try living together.

    We talked this through along with our expectations and what we needed from the other. To make a long story short, his medication stopped working, his depression hit a real low and he began drinking again (he’s an alcoholic too). At this point no longer did he do anything to help around the house or to help me, all those things we talked about went out the window. He became clingy, and insisted I not leave the house because he needed me and was afraid of being alone. He got so bad that I could not sit on the front porch and if he was awake he would tear a book out of my hands if he caught me reading, because it meant I wasn’t paying attention to him. I became alienated from everyone because no one felt welcome with him there.

    Anyway, the verbal abuse got so bad that even the few minutes I could sneak outside to vent to a friend wasn’t enough and I had to end the situation before I lost control and said something I couldn’t take back. It happens, we aren’t perfect and can only take it for so long before we lose our patience.

    I may not live next door but if you ever need to talk know I am here for you.

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    1. Ah Lois, are you sure we aren’t sisters? I understand about the being resented, I am too sometimes and that hurts as all I’m trying to do is take care of him, but me too. It’s a hard line to draw isn’t it?
      Thank you, I know you would be there for me when needed. I appreciate it more than you know. Big hugs!

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  8. Hi Jackie, please don’t be hard on yourself for losing your cool, we’re only human. I’ll write to you better with some ideas later this weekend. But know I’m sending love and light your way. And a big, huge hug 🐶

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    1. Thank you tiny. I just felt so overwhelmed for a few minutes and it was scary. I hope you have a wonderful Thanksgiving and I look forward to hearing from you. Big hugs back my friend! ❤

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  9. What you are having to deal with is huge, and relentless, and what you are doing is amazing. Firstly just know that. You are doing an amazing job in extremely difficult circumstances (sorry if that sounds patronising, I don’t mean it that way, it’s just perhaps hard for you to step out and see what you’re doing objectively!). Even if your marriage hadn’t been on the rocks beforehand, there’s no way that dealing with all this could be anything less than overwhelming, and even the most devoted loving saint of a partner would have occasions of resentment, or losing their temper or whatever.

    What you’re dealing with is the sort of thing that makes me cross when people say “Money can’t buy happiness”. Of course I know that money can’t directly buy happiness but what it can do is alleviate certain things that are dragging you down or making you miserable. How are you meant to find the space to be happy in right now? You have committed to staying with him and being there for him which is admirable, but if you had plenty of money at your disposal, you could pay someone to come and do so many of the chores to just give you a break, you could move to a bigger house again, plus maybe there are things you could buy that could make him more physically comfortable etc. which would make things better for both of you.

    I know I’m not offering any helpful advice here, but I’m really just articulating that you’re in an impossible situation, that isn’t your fault, and that unfortunately doesn’t have a magic answer. But you are doing your best and you are doing great things. I know from other comments that you’ve done lots of research, but are you part of any online support groups or forums for carers like you? There must be comfort to be found in sharing grievances and ideas with others who are in similar situations (which is after all why you wrote this post!).

    Wish I could say something more helpful!

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    1. Thank you so much Vanessa! What you said is very helpful, it helps make me see that I am doing the best I know how to do in a very difficult situation. I needed to see that.

      I have not looked into online groups, so you brought up a very good thing. I will start looking into one this weekend. With the Christmas holiday coming up I feel a bit overwhelmed and so very sad that we have no money for it. But we will survive and with friends like you it makes it so much easier. So thank you again!

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  11. I read this a couple of days ago, Jackie and then my internet connection went down and I couldn’t respond. But this is good because it’s given me time to think about your situation.
    I go ‘in and out’ of the carer role with my hubby for reasons I wont mention here and it can be an absolute nightmare. To me it’s like living with a ghost in the house – sometimes they make a mess or a noise but mostly they’re just something you tiptoe around so you don’t raise their ire. I know this sounds harsh, but it’s true. When you’re with someone who doesn’t fully appreciate what you do for them and how much angst you have for their health it’s extremely frustrating. When they don’t want to help themselves you find yourself crying from nothing other than pure frustration. The most important advice I can give you is that you must look after yourself as a number one priority – even if that means sitting alone with headphones on listening to your favorite music once and a while. If you have a friend you can do coffee with, that’s even better. I’m lucky (which is a really odd way to look at this) in the sense that my best friend’s husband is an alcoholic and we meet once a week for lunch to compare notes and boost each others confidence. ‘They’ say the only way to manage it is to leave the situation, but sometimes we just don’t have that option so we have to manage it the best we can. Hugs to you, my darling. Anytime you want to talk I’m here xxx

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    1. Dear Dianne! Thank you so much for your very wise advice. Sometimes it’s so hard to find some time to myself where I can just ‘be’. I’m also the type of person that needs her quiet time or she just loses it. I don’t get much quiet time anymore and it is wearing me down. I may email you if I can? Well I know I can. Thank you again. xxx

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  12. Pingback: The End Is Upon Us! | To Breathe is to Write

  13. Dear Jackie, oh, Jackie.

    Now that Poblano is over, I have the chance to think about what to say about The Post. I know this is so hard, so very, very hard.

    Setting some foundation … I was laid off from working for the same daily newspaper after 29-plus years, and am now piecing together numerous parttime freelance projects out of my home, making far less than my prime breadwinning salary, and my wife has become the financial rock. For 22 months now, I’m still looking for a solid and rewarding 40-hour job here. We own our home outright, and I’m turning 57 this month, nearing early retirement age. Karen is wonderful about it, like you are, but I nevertheless worry sometimes that she will tire of our slide in combined earnings as I continue to come in also-ran at finalist job interviews, as I have in a handful. There’s my back story. Different but some similarity …

    But this is about you. I admire you for your dedication to your marriage and your husband. He surely does need you. And up there in Canada, his territory, with a house of cards all around you, well, you need what you have, no matter how shaky, that has become compared to what is was before his back went out for good.

    I think his depression and destructive behavior has to be addressed somehow, though, by a third party.

    It sounds by your comments to others that his family is out. They don’t have the intellectual or emotional ammunition to deal with this anyway.

    Can you schedule talks with a goverment social worker, alone at first, to really describe the situation as you see it? And then you can let the worker talk to your husband alone for some sessions, to let him feel like he has his voice? And then finally, the worker can talk to you both in one room together, on a regular schedule, to slowly have everybody agree to a plan of action on their own terms: No drinking. Perhaps work can be found to be done from the couch at home. Or disability payments.

    I don’t know exactly what the conclusions would be, but I think the current behaviors are not it.

    It can’t go on like this for you, or you should think about leaving and going back to your family in the States. Caring for your husband is something you should do, but only if he is part of the solution, not part of an ongoing downward spiral pulling you further and further downward into the abyss.

    You are so incredibly strong, Jackie. I hope the Canadian system is set up to provide you some sort of relief with a branch of reliable service with sound workers to lend an ear and conciliatory advice, stern and strong.

    I hope I have not overstepped any boundaries with my frank look at your dilemma.

    Please keep in touch.

    Mark

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    1. Thank you Mark for your comments. No, you haven’t overstepped the boundries. I’ve asked for help and appreciate any honest thoughts out there. I do hope you find your 40 hour work soon. I feel the frustration and fear in you, as it’s in me too.

      Here in Canada, our family physician needs to refer us to therapy or specialists. So far he has not refered us to a therapist. But, I have not asked him to either, so that fault in with me. I think the main reason I haven’t yet, is this is pretty new to my husband. He has always worked since a kid, it has dealt him quite a blow not to be able to. Because of the meds he takes, he doesn’t have the concentration needed for any type of work. His hands shake too much that he can hardly type or hold a pen.

      I myself am trying to find ways to make extra money working from home. The search continues.

      As for the government help, that search continues also. We seem to fall into an age nightmare. We are too old for some services and too young for others. He recently got turned down for disability benefits as he is ‘officially’ retired. He can have retirement, or disability, not both. Isn’t that bizarre? Anyway, we are and have been trying for another government run program, he has been turned down 3 times so far, but we have new medical information and new dr letters, so we continue the fight for that.

      Thank you again for your concern and suggestions. I hope your situation changes for the good. As I hope mine does.

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      1. Yes, I hope the best for you, Jackie. The government beauracracy maddens me on both sides of the border. Please help your citizens! As for me, I sent out two more resumes yesterday. I keep trying. And hoping. Your situation appears much more pressing to me. And so I shall place my concerns here. I think you need a great advocate doctor who goes the extra mile for you and your husband beyond the time he is in that office, care that extends to the whole situation. Does that exist anymore? You, know, the Marcus Welby MD TV-type of general practitioner who cares about a family situation?

        I have a doctor I love down here that I stay with even though I moved and must now drive 50 miles to his office for my diabetes checkups. I’m not going to change after 25 years of care, roll the dice about finding somebody else I feel looks after the whole me.

        I wonder how you can find a great doctor up there. Just thinking out loud here. Any suggestions, our Canadian friends? Paul? Diana?

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        1. I’m not sure they have a dr like Welby anymore. I have a pretty good relationship with our family dr. I will have to discuss things with him. I live in a smallish community and from what I know, our dr is one of the best. It’s not so much the dr as it is the husband. He was blindsided by his back thing being so severe. I think he needs time to adjust, all though 2 years should have gave him that.

          But with everything else happening about the same time because of the domino effect being without work has done to us financially, it’s been a bit more difficult sometimes.

          The main problem is the government seems to work very very slowly. If at all. The husband has pretty much given up and I keep bailing the boat out. Some days it’s a bit too much. But, it could be worse.

          So here’s to both of us finding something to do! We just keep on doing what we’re doing and eventually the tide will turn in our favor.

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  14. Hi Jackie, So sorry to hear about all that’s going on. Please do talk to your doctor and find out from him/her all the resources that are available to you. There are programs and resources out there to help with the drinking, pain management, etc. – please take advantage of them. Also, I agree with Mark. Your husband needs to be part of the solution and if he isn’t, you should consider going back home. You need to take care of you too.
    Diana xo

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    1. thank you Diana. As far as considering going ‘home’, I am home. This is my home. I am looking into programs and such, to see what there is out there. My husband is on pain management also. As for the drinking, he will have to work on that. The dr knows he drinks, but is trying to address the pain first. Sometimes it gets a bit much to take, but I’ve had some great advice. So thank you again for yours.

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