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Spouses dealing with chronically ill spouses, without sexually or emotionally connections

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Is your spouse chronically ill? How is it affecting you?

By Susan Cody HERWriter Guide June 1, 2011 - 8:37am

Hi All

Thanks to lonely46 for starting this group.

Living with a chronically ill partner can be devastatingly lonely and frustrating, and it's not something society really lets us talk about.

The issue is not about whether we love or care about our ill spouse, it's about the harsh "side effects" that the caregiver suffers. While it's never easy to live with chronic illness, it's also not easy for the caretaker.

Let's share stories about life as the caretaker and the hardships (as well as the joys) of life. We can find comfort and support in knowing that we're not alone.

Best,
~Susan

By Total B December 27, 2013 - 10:27pm

My husband has had some sort of chronic issue for most of our 33 years of married life. It started with multiple surgeries for his back, neck, hernia, gallbladder, knees, ankles and most recently both knees replaced. I think he's had 16 surgeries . Now he has a gastrointestinal issue that is extremely painful (3+ years) that causes nausea and vomiting. They are unable to diagnosis the problem... Yet he continues to eat and is now over 300 lbs.. Thankfully he's 6'2" but that is still a good deal of weight for his frame. I love him very much but am at my wits end. I get that he has pain but he's so angry and I never know what is going to set him off. He's not violent toward me (sometimes I wish he were, then I'd have a real reason to leave) but his highs and lows are almost more than I can take. We walk on eggshells to keep from setting him off.
If I try and say anything about it he turns it around on me. That or he tells me how "sorry" he is. Sorry isn't cutting it.
I'm sick of this pity party I attend much to frequently but am not sure exactly how to stop it. I am at the point of barely speaking to him as the less I say the less chance there is of setting him off...again.
I have to say that I'm super blessed in that I work fulltime (I thank God for my job and a place to go daily). While I'm gone he does usually manage to get dinner ready and does some laundry. But his days are filled with the computer... Facebook and reading. So nothing much else gets done around here although our home is and has been in the middle of a remodel project of one kind or another for the last 20+ years... grrrr...
Okay, thank you for letting me vent. I just need to get this off my shoulders. I can't talk to family and friends about it as I don't want to turn them against him on my behalf. My son (30+) already has to deal with it and doesn't need to hear about it from me. Thanks for this forum... Sorry for being such a big whiney baby...

December 27, 2013 - 10:27pm
By ametals December 12, 2013 - 2:55pm

I have been married for almost 30 years. My wife has always had something. First it was Crones, then back and neck and allergies, and every cold and flu you can imagine and on and on and on. I have finally accepted that she is a chronically ill person. Most of the time, I am patient and can handle it. However, at times, I become very frustrated and depressed about it. I look around at family and friends and see how NORMAL their lives are. They travel and do things, while we stay and home. Its has come to the point that I cannot have a conversation with her without talking about her problems. Our whole world is about her and her issues. Normally, I can handle it.. But today. I want to scream and feel sorry for myself that I am stuck.

December 12, 2013 - 2:55pm
By MDwife November 18, 2013 - 10:09am

My husband has Meniere's Disease, and also suffers from depression, anxiety, and phobias. His whole life is about his illness, symptoms, and frequent doctor visits. All he ever talks about or thinks about is his Meniere's Disease. He says that I can't understand how awful it is, because I don't have it...which I suppose is true. However, I truly believe that his symptoms are made worse by his depression and the obsessive amount of time spent on the online support group chatting about his illness, the symptoms, and the potential side effects of his medications/treatments. He is entirely negative about everything in life! I feel alone, isolated, frustrated, and frankly neglected. As I told him last night, "We don't have a marriage anymore, we just have Meniere's".

November 18, 2013 - 10:09am
By Susan Cody HERWriter Guide September 6, 2013 - 8:41am

Hi islandbrook

I'm so sorry you are in this situation and you're right, you have a lot of life ahead of you so something has to change.

I hope that counseling with help both of you (both individually and then as a couple).

Do you have outside interests? I know that you likely have little time for activities away from kids, your work and caring for your husband but having something all to yourself might really help you. Everyone needs a little 'me' time, especially people like you who get very little of it.

I think joining a caregivers group is also a good idea.

About sex - I can't give advice on this because it's a medical issue with your husband. Could you and he talk to his doctor about this?

We hope to hear back from you!

Susan

September 6, 2013 - 8:41am
By Islandbrook August 8, 2013 - 9:41am

Thanks everyone for sharing your stories. I too have a husband who has been chronically ill with back issues and nerve damage for 10 years. We have always have had a very passionate and loving sex life. However, in the past 2 years our sexual relationship has decreased to nothing. He had a pain pump implanted in December and since this surgery sex has become painful for him. It even is painful for him to get aroused so finding alternative means to be close is not an option. I love my husband with all of my heart (we will be married 24 years this year) but I feel so lonely. From going to a loving and passionate sex life to nothing has been devastating to me. I have tried other ways to satisfy myself but end up feeling more lonely. I am 42, my husband is 45 so we are still young and in the prime of our lives. My husbands health has impacted him greatly, he suffers from depression as well has been diagnosed with PTSD. It's so many issues on top of each other and I try to be understanding but his health has made him into a selfish and self centered person who quite frankly does not love himself like he used to. This in turn impacts me and my kids in a negative way.

I am trying and going to counseling but my emotions overwhelm me at times and I just feel sad even depressed. He also is going to start counseling to get his head straight himself as well and we cannot even start marriage counseling until he gets himself together first.

I am really trying and don't want a divorce but in the end he may want out because he feels like he cannot meet my needs emotionally and sexually. I am a beautiful, loving and fun person who is successful professional and does deserve to be loved. I am very torn up inside due to all of this. Does anyone have any advice or can share what they have done to cope?

August 8, 2013 - 9:41am
By Sarrah Patton August 5, 2013 - 12:19pm

My husband has psoriatic arthritis, he was diagnosed nearly three years ago. There is so much to say regarding the matter, I don't even know where to begin...this is the second draft of me telling my story, the first was very lengthy, as the matter has been going on since we met. There is an underlying illness here that was diagnosed when he was in the military, but is not being treated. I have been the pain pill hoarder. I am the HUGE bitch that never allows him to make any decisions on his own, nothing is ever good enough for, never lets him sleep in until however long he wants, turns the kids against him, and ultimately the reason we have no friends. That is entirely esoteric, I know, but it is all I can manage to get out right now. I more often that not, want this relationship to be over. I want somebody to take care of me for a change, or better yet, A PARTNERSHIP. I am sick of being the bad guy in the marriage, and then told I am making him out to be the bad guy. Why do either of us have to be the bad guy? I know that I am fed up with his illness, but often times, I feel like he is using his illness in order to do what he really would prefer to be, or not be, doing. How can I take this for my entire life? IS THIS MY LIFE? Somebody, please, help me!

August 5, 2013 - 12:19pm
By Susan Cody HERWriter Guide August 5, 2013 - 9:20am

Hi Cera

You have responses on your individual post - check them out!

Susan

August 5, 2013 - 9:20am
By Cera Rose Mergen August 4, 2013 - 2:40pm

My husband is chronicly ill with Heart failure and lung disease and many other small things that add up and he is only 39, I am 31 and feel like I am in the prime of my life, I have never feltt better physially.
Theres always a but.....My husband is like a stranger to me now, he is the opposite of what I married and I know people change I know I have but I live everyday in this struggle with myself .
His health has changed him in a negative way, towards me and my kids....I dont think he even loves himself. I dont know how long he has to live but I have had a very bad feeling lately and I cannot shake it. He gets sick and instead of getting better like before he was sick......he just stays where he is at, maybe gets worse.
I feel like Im waiting for that call, I cannot take this anymore.
My best friend is gone, I feel like i am mourning him while he is still here but I cannot help this... I dont know what to do, Im so lost...

August 4, 2013 - 2:40pm
By LissaM June 26, 2013 - 7:00pm

I'm lonely when my husband is in bed all day. It's not like I don't have things to do, but I find it hard to motivate myself when he's not around. I usually sit on the computer too long. Wish I could just treat it like any other day and do what I like and enjoy, but I find it so hard to be alone. I want someone to talk to as I go about my day - that just seems to create energy for me. I do go for walks and end up talking to anyone who seems to be looking to talk too. That helps, but it's not a cure all for sure. Hanging in there though.

June 26, 2013 - 7:00pm
By Susan Cody HERWriter Guide February 19, 2013 - 11:06am

PTPrincess

What incredibly good advice you give - thank you.

Susan

February 19, 2013 - 11:06am
By PTPRINCESS February 14, 2013 - 5:03am

Dear Jones35
First of all, I'm new here and my husband and I have been dealing with his chronic illness for 5 yrs now which is nothing compared to some. I have so much to learn myself but I hope you don't mind me offering my opinion? Eeechem...:) here goes. I think that you have done a very good thing in finding this forum a place for you to be honest despite your feeling you may not be responded to which is obviously not the case. The very first thing I would like to point out is that for no reason shoud you feel guilty about the feelings you're having. Everything you stated is a completely normal part of being a human being. I would say that even if your post had outright said something like "my wife is sick and we haven't had sex in 10 yrs. I don't want to cheat on her but a man has needs and I'm not sure how to cope." Now I know that's nothing close to what you implied. I think you are lonely and in a place many of us are trying to care for the one we love, as we promised we would yet still balance our own health without becoming too fatiued, burned out and emotionally drained. All the while we're trying not to feel bad about fantasizing about what it would be like to have a "normal spouse" that was able to actively participate in all the things a "normal" married couple would. Here's the thing, you obviously love your wife. That's true or you wouldn't be here on the internet searching for ways to help yourself in order to better help her yet still remain honest. You wrote your feelings down the best you could for the public to scrutinize in the truest fashion you could. Only a man who loves his wife more than himself would do such a thing. You are a good husband and my hat is off to you! Many men would have given up a long time ago. Ok, enough of that let's talk about your problem. You're not happy, correct? You have concluded that your unhappiness is due to lack of intamacy and human connection. In short, you are "lonely." Let me assure you that your longing for basic human needs cannot be ignored despite your wife's condition. They can be for a time but at some point you will burn out and eventually throw in the hat. Connection with other humans and though some may argue, I believe that sexual fufillment are basic human needs. God designed us to crave those things for a purpose. Now please don't misunderstand me as I'm not saying that if your wife is unable to have sex with you how and when you want and if she's unable to be intimate with you the way you dream of in your head then you're needs are being ignored and therefore you have a free pass to leave her. I do suggest that you may need to make some adjustments to what you feel you need in order to be content for the sake of your marriage. What exactly is intamacy and human connection to you? By what acts or through what words or feelings are these two things achieved? Be specific. Now I know you have thought of ways a healthy woman could meet these standards or you wouldn't be conflicted to begin with. So the challenge is to find ways that a woman with limited ability to physically function could meet these needs. Can you comprimise or adjust these needs in a way that your wife could likely achieve them? Maybe you could benifit from counseling to help you identify what it is you truly feel you are missing on the deepest of levels. Now the other aspect is her willingness. Is she aware of your feelings?How does she feel? Is she willing to work with you? Yes she is sick but she is still responsible to hold up her end of the marriage deal to the best of her ability. Being sick does not exempt her from giving what she is functionally able to in order to enrich your life. If she's unwilling to make these attempts then you have another issue entirely. Maybe the two of you need to seek counseling with a professional who understands chronic illness and not only how it affects the afflicted but the family as well. I think I have said enough and I truly hope something I've rambled about helps you to find fufillment in your marriage despite your wife's illness. Oh, one more thing, the best advice a therapist ever gave was that if we wanted to regain connection with one another and be happy doing it then we needed to make 1 simple rule. That rule was that my husbands pain, dr appts, upcoming tests etc could not be discussed under the roof of our house. Even if we had to step outside our front door to honor this rule. That was very very difficult for a while and at first we didn't know what to say to one another. Our lives completly revolved around his pain and his illness. It didn't take long before silent the silent momments got further and further apart until I was able to discuss my day and my feelings with him and get his input. It can work out if the two of you commit to working at it. Good luck and God bless!

February 14, 2013 - 5:03am
By jonez35 February 6, 2013 - 1:17pm

I am glad I found this post. I thought there was something wrong with me. I could not understand why I felt alone all the time. My wife has rheumatoid Arthritis, back problems, hormonal imbalance and a number of other issues. I am not trivializing her illness but it's all we talk about. We haven't made live or had sex in years about 10 approximately. I crave intimacy but because I do love my wife so I never allow myself to get that close to another female. Besides It would not be fair. She is on some very potent narcotic medications that make her irritable and withdrawn. The one thing we do is talk. My wife and I have discussed the issue but she never follows through. now please let me reiterate, while we have not had sex this isn't just about that. I don't want the reader to think I run behind my wife asking for sex. I am talking about intimate moments like holding hands, snuggling on the couch together, a hug every once in a while a touch on the arm when we are just sitting there. It seems like unless we are talking about the pain she is in or medical procedures or side effects there is no connection. I have spoken to her over and over and I am left feeling alone like a sibling, the guy that pays the bills, buys her things. I think I lavish gifts on her to compensate for the lack of intimacy, I have to stop that. I know she loves me but it isn't fulfilling to me as a man. I probably will not get a response from anyone on this page and that is okay. It is good to finally get the words out of me. We have two boys and I am afraid that when they are grown I will have to leave her so that I can be free to connect with another human being in a more emotionally satisfying relationship. To feel someone's skin against mine. To look into someones eyes and know how they feel about me.
I am sending this out wondering if it is just me, perhaps I need so suck it up and drive on and accept things the way they are. I am conflicted...that is for sure.

February 6, 2013 - 1:17pm
By Susan Cody HERWriter Guide January 28, 2012 - 2:56pm

Hi cscrbibe

Thanks so much for your post and welcome!

No, you are not remotely selfish for feeling as you do. Your feelings are completely normal!

Your husband sounds wonderful, working hard and taking care of the children on his day off. He also sounds like a genuinely decent husband who is understanding of your feelings.

You also sound the same!

The problem is that chronic illnesses will take their toll no matter how nice everyone is. It's terrible for your husband and terrible for you because you share the illness in a way, even though he is the one with the pain.

I wonder if a mother's helper is what you need? This is a younger person, perhaps someone just enrolled in community college or a high school senior who is just taking a few classes. These helpers can be a wonderful asset and can take care of your children and do light household chores, even when your husband is home. They also cost far less than a nanny although they too deserve a fair wage. You can also supply a benefit of free meals for them when they are in your home. Do you think this is possible? It's better and generally far less expensive than daycare, there is no pick up or drop off and your kids get the benefit of being in their own home. I hope you can look into this option.

With regard to your mental health - I think joint or individual counseling would be great just so you can express your feelings and frustrations, and perhaps going as a couple once in a while would also be a way for both of you to talk about your lives and what both of you are going through. Having a neutral third party could really benefit you.

Please let me know what you think and remember that you share your husband's illness so you get "side effects" too. You're not being selfish, you are a busy, pregnant, working mom with a chronically ill husband. Your feelings are entirely normal!

Best,

~Susan

January 28, 2012 - 2:56pm
By cscribe2180 January 23, 2012 - 7:53pm

Hello all. I came across this group by accident, but now I'm a little relieved that I found it. My husband currently deals with a multitude of chronic illnesses, including but not limited to diverticulitis, kidney stones and gout. He also has high blood pressure. I'm pretty convinced they are all related and caused by the fact that he has high levels of uric acid in his blood. Every six weeks or so, he has a "flare-up." Often, they are "small," but sometimes they are very severe to the point where he must go to the hospital. Even though he is in tremendous pain, he often still goes to work. But if it's really bad, he'll stay home, or go to the emergency room. We've been to just about every emergency room in our region due to his health issues. I live in constant fear that I'll receive a phone call that something terrible has happened to him, like he needed to have emergency surgery, or he's collapsed at work or something.

To top it off, he works a retail job, which means he very often isn't home until at least 7:30 or 8 at night and never around on weekends. We have a 2-year-old son, and we are expecting a daughter in March. Even when he isn't ill, I carry a lot of the responsibility on the home front. When he is there, he is fully present and helpful. But because of work, he often isn't there. He's never around on the weekends until the evenings. He takes care of our son on his days off during the week.

I feel so helpless, and worst of all, selfish -- it's gotten to the point where I immediately know by looking at his face whether or not he's in the throws of an "attack" of some kind. I used to feel sympathy. I used to pour over research. I used to meticulously plan out low-purine menus because of his body's high uric acid levels. A while ago he told me he wanted to try being a vegetarian so I did it with him for a while. I wanted to stick with it more than he did.

Now, it's gotten to the point where he'll tell me he's not feeling well, or in pain, or whatever, and it fills me with dread and resentment -- because this means I will once again have to go through a bout of picking up all the slack in our household, on top of everything I already do to support the reality of his work schedule.

Right now, it also means that I might have to take time off from work, which means I will have less paid time for my maternity leave. In addition, it means we will have to rely on daycare, which is extra money out of our pockets.

Add the fact that I'm 31 weeks pregnant, and, well...let's just say the most recent "attack" -- which we're still in the middle of, isn't going so well. Over the weekend, he promised me that I could sleep in on Sunday since he had the day off. We went to his work holiday party the night before and he had two glasses of red wine. He spend most of the night throwing up and basically went between sleeping and throwing up all of Sunday morning. Then my son woke up at 4 a.m., so no sleeping in for me. I finally got to take a nap in the afternoon...but our whole Sunday was completely shot. Instead of accepting it I just cried with anger.

Then, my husband is set to spend the day with my son tomorrow and he comes home tonight in pain, saying he's having another diverticulitis attack. My reaction just made me sad. I just said, "Well, I guess you won't be able to watch him tomorrow," and made plans to call daycare in the morning. Then I went in the bathroom and cried. I talked to him about how I'm feeling, just saying that I'm tired and stressed, and really emotionally drained from his illness. I apologized, and he told me I have nothing to apologize for, and that he'll be OK. It's like whenever he gets sick I just go on autopilot because it's all I can do to keep from completely falling apart.

I have family I can ask for help, and I do ask for help, but my mother is dealing with her own "health issues" -- basically, depression. She went from being my son's daycare provider when he was a baby to being my last resort when I need a babysitter. She is another family member who takes a lot of my energy, just trying to help her deal with her issues and get answers from her doctors. My father passed away seven years ago. My sister has been a tremendous help to us, but she can only do so much.

I love my husband very much. But sometimes I feel like a single mother with two children...and a third on the way. Am I a terrible person for feeling like this?

January 23, 2012 - 7:53pm
By Susan Cody HERWriter Guide December 11, 2011 - 9:25am

Hi again daytoday

Thanks for your post.

From a practical stance - your boyfriend needs to look into working from home. There are plenty of online training programs where he can hone his skills and then he can start looking for telecommuting jobs. There are plenty out there but he needs some guidance to find ones that are completely legitimate. There are outlets online that can also help with this and even if he could work part time, day four hours a day, he could use all that money to put towards his bills. 

I think you need to stop paying his bills. As you said, you are supporting him emotionally and financially in terms of giving him a home, food, etc. He is going to have to sort out the bills issue himself, you need to cease all that immediately, as I think you have done.

Has he or you looked into programs that can help financially, with hospital bills and/or medication?

Also, I understand it's frustrating to see family go on vacations etc while your boyfriend is in need of money but you'll have to accept that it's their money and they can do as they wish. I do think it's a shame that they are not helping out; they must have their own reasons for it, I suppose. But one thing you can definitely ask of them is that they come over after this forthcoming surgery to help out - their time can help almost as much as money and it's the least they could do for their son/brother. Even if they could spend only a few hours a week, that would give you a couple of evenings off. You will definitely need this.

You should also get in touch with a support group for yourself - Carergivers.com can help; you can link to them here: http://www.caregiver.com/

Best,

~Susan

December 11, 2011 - 9:25am
By daytoday December 5, 2011 - 2:40pm

Thank you so much for responding to my questions. First, to clear up a question you asked-we have been together just under five years. He had the heart attack and lost the job after we were living together for one year.
Unfortunately, his friend now says he doesn't think he can have my boyfriend stay with him but I think he would be glad to come and help out at the house. It seems as if as time goes on, there is no one willing to help out. His parents have paid his health insurance premium and each month they complain and don't seem to understand why he can't find work and has accrued so much cc debt just to keep going. His parents and his sibling have money and travel quite a lot (for example, his sibling just got back from a cruise and his parents are currently on another cruise) yet his sister has never offered to help him financially. I just don't understand why they can't see how difficult this is on me and that they need to help.
I could go on and on but the bottom line is - I am able to pay my bills and put a roof over both of our heads. I cannot take any more of my money to pay his bills. I can give him a place to recuperate and I can hope that he gets work. I cannot keep emotionally and physically stress myself worrying about our lives. Whether it is from love or from obligation to another, I would feel guilty to have him leave the house. Particularly when he has no prospects now. I think I am the only thing keeping him from having any chance at all. I just can't have the guilt of the consequences of my actions on my head.
So, for now, I am back to my blog name - day to day.

December 5, 2011 - 2:40pm
By Susan Cody HERWriter Guide December 2, 2011 - 5:08pm

Hi daytoday

Thank you so much for your post and I'm sorry your boyfriend is so ill. I'm also sorry you're in such a position - there is really no easy answer here, is there?

How long had you been together before this happened?

Also, draining your retirement is downright dangerous to you. You need to keep that money, as I'm sure you know. Especially these days.

daytoday, I know that we are in it for better or worse (although you are not married) but I think you need a break. I also think he may know this too and certainly his friends know - otherwise why would they have offered to take him in when he lives with you?

This may be a gift to you for now. It doesn't mean you are breaking up but it does offer you a chance for respite. In many countries, "respite care" is common. Ill family members or family members with chronic conditions are cared for temporarily (for a period of days or weeks - even several months in some cases). This is done to give the caregiver a break - a much needed break. As long as your boyfriend knows your intentions are good and that you will still visit and be there for him, I encourage you at least consider taking the friend up on this offer for respite care.

If not, you may burn out and your health may get worse. I know guilt is the obvious emotion here but guilt can only be real if you have done something wrong and you clearly have not - quite the opposite. You may not even use up the 3-6 months offered but reaching out and accepting help from a friend is perfectly acceptable whether it's for a few weeks or a few months. You deserve a break - you deserve help. I don't see how any opposing opinion could hold any merit.

Good luck with this, let us know if we can help you more or talk to us more about  this if you need to.

We hope to hear back from you,

~Susan

December 2, 2011 - 5:08pm
By daytoday November 27, 2011 - 2:39pm

A year after my boyfriend moved in with me he had a heart attack. A month later he lost his job and has not been able to find a job since. He has had a good career and has always supported himself (until now). It has now been 3 years since the heart attack and since then he has been diagnosed with Chron's disease, has had a back surgery and is now about to have a second back surgery. Between the surgeries and illnesses and no financial support, I am overwhelmed. I go back and forth with what I should do. It seems as if we go from one bad situation to the next and I don't feel like I have an equal partner but I sick anchor that I am dragging along. I now have panic attacks and high blood pressure. His parents have paid for his health insurance but I am picking up all the housing and living expenses. More importantly, I don't see an end, better times, etc. I am 55 years old and self-employed. I have spent over $30,000 of my retirement to keep him going and (dwindling down) and want to buy a house again. He has a friend who has offered to take him in after the surgery to recover there (should be 3 to 6 months). I am torn as part of me feels that I am obligated to take care of him (in sickness and in health) and a part of me just doesn't know if I can go through it again.

Any thoughts?

November 27, 2011 - 2:39pm
By Susan Cody HERWriter Guide November 6, 2011 - 7:55am

Hi PowHersLife

Thanks for your post and for joining us.

I'm sorry you are dealing with this; an alcoholic who won't get help is nearly impossible to deal with. And having diabetes certainly won't help him; his actions are quite dangerous.

Giving people advice about an addict who refuses help is hard. There are varying opinions on this. Some say to keep trying, other say to give an ultimatum and stick to it. For example, tell them they have to leave if they continue drinking, or leave themselves if they don't get help. Refuse to buy them alcohol or give any money to them - or any support at all.

Depending on your husband, he simply may need more support and coaxing - or you may have to make - and stick with - an ultimatum. Ultimatums sometimes don't work, but other times, they are a huge wakeup call to the addict. Of course, this is only if promises are followed through.In the end, only the addict can make the decision.

Let me know what you think!

~Susan

November 6, 2011 - 7:55am
By PowHerSLife October 30, 2011 - 10:06pm

My husband has type 2 diabetes and he is an active drinking alcoholic. He will not allow me to help him and he is deliberately pushing me away from him. I am grateful for a group setting in which to share and gain some insights that can help me as I love him and try to do what is best for him. Thank you.

October 30, 2011 - 10:06pm