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

By HERWriter Guide March 3, 2018 - 12:00am

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.


Here is another resource on sick spouse

By July 27, 2018 - 7:14pm

Hi all...this is my very first time joining a group or posting in any forum like this. I've been married to my husband for 14 years, he's 39 and I just turned 37- we have 2 daughters, ages 10 and 8. When we first got married, he seemed chronically fatigued and went to the dr, but was given a clean bill of health. We blamed it on his job, he worked midnights and lots of overtime on whatever shift he could get it. He eventually got off 3rd shift, but things never improved-just continually worsened. He would occasionally go to the dr, but things were always "fine" then 3 years ago he admitted to me that he wasn't just tired all the time, he also had constant pain all over his body, numbness and tingling in both hands and feet, legs and arms. We found out he had a herniated disc at L5-S1 and hoped that surgery would resolve most of his problems. It didn't. So we started a pursuit for a diagnosis and he revealed more and more things he hadn't told me. He went to an ENT and has been diagnosed with Bilateral Meniere's Disease and severe Vertigo. His hearing is bad enough he really should get hearing aides. He almost blacks out when he stands up, we consulted with a neurologist who diagnosed him with an Autonomic Neuropathy and confirmed damage to his small nerve fibers, but is unable to tell us why. The neuro sent us to a Rheumatologist, who won't commit to a diagnosis, just wants to treat pain. We went for a second opinion with a rheumatologist at Cleveland Clinic-he barely looked at my husband and diagnosed him with Fibromyalgia and gave him a referral to a Pain Management clinic. We consulted with a 3rd Rheumatologist at University Hospitals Cleveland, and he initially diagnosed Psoriatic Arthritis and has now altered the diagnosis to Spondyloarthropathy. He's currently waiting to hopefully be approved by the insurance company for Humira injections. He has, thankfully, been able to continue working..but that's all he does. He sometimes takes 3-4 naps a day, he also has sleep apnea and has a CPAP, but it doesn't help. He spends most weekends sacked out on the couch. He's extremely forgetful, I'm constantly having to remind him to take his meds, don't forget his glasses, his wallet, etc. At least 3-4 times a month I have to take him 1 of these items at work that he's forgotten. I feel so bad for him, but I'm so exhausted..I have migraines, I don't sleep well, but I still manage to take care of absolutely everything- the kids, the house, I work full time, and I take care of my father who has Macular Dystrophy. I absolutely feel like I am at my wits end, and if I complain or cry or "lose it" he looks at me like I've ripped his heart out. I just don't know what to do. Thanks for letting me vent.

July 27, 2018 - 7:14pm
By July 3, 2018 - 6:48am

My husband also suffers from migraines. It is so hard. I'm so glad to see I'm not the only one going through this.

July 3, 2018 - 6:48am
By March 29, 2018 - 5:08am

I've been married to my husband for 17 years now. This is my 2nd marriage in life. Since 2012 my husband seems to have had some kind of illness. First it was his back and two back surgeries that seemed to be unsuccessful and he ended up on disability. In 2015, he was diagnosed with a meningioma (non-cancerous) brain tumor. He had a 14 hour surgery to remove as much of the tumor as possible and then he seemed to sleep all the time for the next year. In 2017 it began to grow again which had him losing vision, again. This time he had a 6 week,5 days a week course of radiation. More sleeping all the time and then the start of a sick stomach through out the day. After several tests, the doctors are unable to find a medical reason for his sick stomach. He was unable to do things around the house yet when he wanted to help out with a church project he was able to go and be a part of it. It's just so frustrating! He's not allowed to drive right now as his eye sight is not what it should be. Which means I get the privilege of driving him to all his various appoints. All I can say is I am tired . . . I want to be compassionate and supportive but it's become very draining to have him sick all the time! Each time he seems to be getting a little better and taking more interest in life, something changes and he starts going down hill again. I needed a surgery last year and had to put it on hold until he started to feel better. Than when I did have my surgery, he was not very helpful or compassionate during my recovery time when I needed help. In fact, he seemed to start getting sicker and having more symptoms . . . There doesn't seem to be an end in sight . . .

March 29, 2018 - 5:08am
By March 28, 2018 - 10:54am

I have been married for 13 years and it seems like forever and not in a good way. My husband is a person who has illness after illness. He has not worked in almost a year because it has gotten worse. I make almost six figures but because the entire household rest on me, it doesn't feel like it. Because he is home 24/7 the bills have increased. He watches TV all day long and plays computer games on his phone. In addition, b/c he is home more food has to put in the house for him to eat. He had no job benefits, so all of his medical expenses are also added to my expenses. At one point he was not taking care of himself so I prepared myself for his death by removing myself from him emotionally. This is not the life I envisioned for my marriage. He has lost all motivation and basically I see him as dead weight. I have told him he can at least apply for Work At Home jobs. He also is addicted to cigarettes and neighbors give them to him or he finds change around the house to buy them. Then he expects me to give him spending money (for what? you not going anywhere) and IF we go out I have to ALL THE TIME buy for two people. I try not to hate him but it's getting old.

March 28, 2018 - 10:54am
By January 2, 2018 - 10:05pm

Hi everyone,

I just found this thread and I had to join it. I am 36 years old and my husband is 44. We have been together for a total of almost 18 years. I love my husband dearly, I truly do, but we have been dealing with his nonstop health issues for about the past 10 years now. He has always had some health issues, but they have become essentially nonstop over the past decade. He is a type 2 diabetic, is overweight, has hypertension, etc. He was officially diagnosed with type 2 diabetes in the early 2000s (I want to say around 2003, maybe 2004) and has been on insulin for quite a few years now. In the spring of 2006, he developed his very first episode of pancreatitis. Following that, he would get about 1-2 flare-ups of pancreatitis per year and would usually end up in the hospital for a couple of days to get it under control. We were always told that it was caused by his triglycerides being severely elevated. It wasn't fun, but at least it only happened 1 or 2 times a year and he was fine the rest of the time. However, in June of 2013, he became extremely ill. He couldn't keep any food down, had severe abdominal pain, a significant amount of vomiting, and was rapidly losing weight. He spent that entire summer in and out of the hospital and even had to be transferred to a hospital 2 hours away from us for a higher level of care because our local hospital couldn't help him. It turned out that he had severe bile duct obstructions caused by stones and he he underwent multiple ERCPs with bile duct dilation and had several stents put in and later removed. He kept getting re-obstructed throughout that entire summer for reasons that were a total mystery to his gastroenterologist. It was also found at that time that he had a cyst on his pancreas that had burst and made him extremely septic. It was a VERY rough summer, but he finally got much better by the end of the summer/early fall and was able to go back to work in September or October. He then had another flare-up of pancreatitis that winter and required yet another ERCP, which our local hospital was able to do. Then, in February of 2014, he fell on the ice and severely tore his rotator cuff and ruptured his biceps muscle, which he had surgery for that April (it took forever for him to get in for surgery). This caused him to be out of work and on short-term disability for several months. Then, in November of 2015, he became very ill with what we thought were gallbladder issues as the symptoms he had were textbook for cholecystitis. He went to the ER, where they did a full cardiac workup because he was complaining of some chest pain, which can also be a symptom of cholecystitis, so we thought it was related to that; however, they did a stress test, which turned out to be abnormal. They then attempted a cardiac cath, but were unable to do anything via the cath because the two blockages that he had in his arteries were too severe and he ended up requiring double-bypass open-heart surgery in early December of 2015. Then, about a month and a half later (while he was still recovering from his heart surgery), they ended up taking his gallbladder out because that was also in very bad shape and making him sick. Between his heart surgery and gallbladder removal, he was out of work for several months. Well, after his gallbladder removal in late January of 2016, he started having severe back and neck pain, which he didn't have before. He finally had an MRI in the early spring of 2016, which showed bulging disks and spinal canal stenosis. He spent multiple months going to pain management for injections and even had a rhizotomy, which did nothing to help. He is CONSTANTLY in pain and is constantly complaining about it. He has no energy, is usually in a grumpy mood, and never wants to do anything on the weekends anymore because he hurts too much. If I want to go out and do things with him, he usually just ends up getting annoyed with me. He has had this back and neck pain issue for almost 2 years now and it's really getting old. The neurosurgeon said that he does not need surgery, but they are talking about trying a pain stimulator and he is currently waiting to get into pain management to have a trial one put in to see if it helps him. If it does, then the neurosurgeon will put a permanent one in. During this entire time, he has been on a variety of different pain meds, including oxycodone, hydrocodone, Lyrica, and even recently he was put on methadone (which I had a small fit about as I think that was total overkill). I have to wonder how all of these prolonged pain meds are affecting him. He has absolutely no drive or motivation anymore. He goes to work, texts me throughout the day complaining about how much pain he is in or how he doesn't feel well and then, when he comes home in the evening, he usually goes straight to bed and I hardly ever see him (I work from home). Then, last week, he started having abdominal pain, nausea, and vomiting. At first, he thought it was just a bug that he had caught at work, but it didn't go away or get better. He went to his primary doctor, who sent him to the ER for an abdominal ultrasound, and he was told that he had diverticulitis, which I personally think is from all of the pain meds he has been taking over the years as they can do a number on the GI system, but he adamantly denies that. It's like he's in denial. He missed work today and went to see his doctor, who did a stool test and told him that he has a fungal infection and put him on more antibiotics. After dealing with all of these nonstop health issues over the past decade, I am at my breaking point. I don't think there has been a single day in the past 4 years where he hasn't complained about something. We have no quality of life anymore because just about everything revolves around his health and him constantly not feeling well. He complains nonstop and spends so much time in bed when he's not working. He sometimes even takes it out on me. It's REALLY getting to me. I am so frustrated. I have basically been his caretaker all of these years. I'm only 36 and I feel like I'm married to a 95-year-old!!!!! I am completely drained and am at the end of my rope. Everything has been about him and his ailments for years. What about me??? It has been one thing after another after another with him over the past several years and it's like we never get a break. If it's not one health issue, it's another. Oh, and he is also a smoker and still has not quit, even though he KNOWS that he needs to, especially after his heart surgery 2 years ago. I just know that the cigarettes are a huge factor when it comes to his overall health (or lack thereof). His doctors have told him that it's extremely imperative that he quits, I have told him this, and our friends and family have told him this, but it's like he doesn't even try. Even HE knows that he needs to quit, but he doesn't! He actually had me convinced that he had totally quit after his bypass surgery, but I later found out that he was sneaking in cigarettes in our basement by opening the bulkhead door so that the smoke would go outside. He knows that I know he is still smoking, even 2 years later, yet he still tries to lie to me about it and says that he's not, even though I can smell it (I am not a smoker and cannot stand the smell) and I have seen packs of cigarettes both on his desk, in the center console of our Jeep, and in his work bag. I have told him several times that him lying about it makes me even angrier than the fact that he is still smoking, yet he continues to deny that he's been smoking, even when I can clearly smell it. I just don't know how much more I can take. I am a young, active, healthy, normally upbeat and outgoing person, but he has brought me down so much with all of his nonstop health issues over the years and it has gotten to the point where I am starting to feel quite a bit of resentment and am having a VERY hard time being sympathetic. I really feel that it has put me into a state of depression. The main reason I am so frustrated is because I don't see him doing anything to help himself. He never exercises, his diet is, for the most part, horrible, and he will not quit smoking. His diabetes has been out of control for years as well. I just don't know what else to do. Some days, I feel like I am about to explode because I am so frustrated. It's like he's determined to never be well. I just don't get it.

Anyway, sorry this was so long. I just really needed to vent and thought this would be a good place to do that.

Thanks for listening/reading!!!

January 2, 2018 - 10:05pm
By October 4, 2017 - 8:51am

Hello all. I have just joined this group and spent half an hour reading the posts after googling 'husband always ill I can't cope', which pretty much sums up why I am here writing this. I have had enough. I feel like I can't take it any more but that there is nothing I can do. He is always ill but his own needs come before mine every time. He works full time in a physical job that takes it all out of him, he comes home and does nothing until it is time for work again the next day. By nothing, I really mean absolutely nothing. He is on the sofa or in bed. He comes to the table to eat the dinner I have made (I work too), he doesn't get out of his messy work clothes, he doesn't wash, he doesn't walk the poor dogs that never get walked, he doesn't help the children with anything, he is just on the sofa or in bed for 16 hours until work time again. He has fibromyalgia, epilepsy, regular infections/fevers/vomiting, a sleep disorder etc - I am sympathetic but I am also angry. There are things that he could be doing to help himself, but he doesn't do them - for example, change jobs, work less hours, do light exercise, eat well, drink water, not try to fall asleep on the sofa with TV and lights on etc. He doesn't do any of these things but talks a good talk. Everything is left to me, he has literally no understanding of what I have to do in a day with the cooking, cleaning, laundry, bills, school runs, ongoing communication and battles for my son who has Autism, the dogs, work (9-3pm) etc. His brain nevery has to plan things, he gets picked up for work, gets dropped home and that is it. I am so angry right now with my life. He has been in hospital twice this month and I am exhausted. I can't keep doing everything and looking after everyone and worrying about him and feeling guilty for feeling annoyed. I've had ill health myself and he hasn't gone with me to appointments or helped lessen the load. When I have said 'I go to all your appointments with you, I'd like you to come to mine' he has given excuses like work, and what purpose would be serve at the appointment etc. I take time off work for his appointments, I take time off work for meetings regarding the kids schooling, vet and grooming appointments, car maintenance and tests etc. He won't do anything for any of us.

October 4, 2017 - 8:51am
By September 8, 2017 - 9:33am

My husband of 22 years has been chronically ill for over 10 years, though he suffered from depression and anger issues several years before that. It all started with a rare form of thyroid cancer. After that diagnosis I have been his sole caregiver. I have given up my career, my life, and my happiness to care for him. I love him and would never leave him, but I am angry that this is my life. His depression and anger has progressively gotten worse over the years (understandably so) and he lashes out at me frequently.
I know that he loves me too, but his illnesses are all consuming for him. They are his favorite subjects to talk about. He will often interrupt what I am saying and turn the subject around to his illness.

This feels so good just to write this. I would never tell friends or family what how I feel, lest I be seen as an uncaring monster.

September 8, 2017 - 9:33am
By July 20, 2017 - 3:29pm

My boyfriend of 6 years suffers from congestive heart failure from the heart attack he had 10 years ago and also chronic depression. He had had this chronic illness when we met, but last year he was admitted to hospital due to pneumonia. He was on life support for 2 weeks, and it has worsened his condition significantly. He can't do much walking even around the house and needs the wheelchair to help him move around. He takes the electric cart at grocery store and is in constant heart pain. He can't sleep well and feels drowning when sitting or lying in wrong position. On top of it, he suffers from depression. Never diagnosed but he feels depressed from time to time and even occasionally feeling tired of life (although not actively suicidal). He is on welfare and lives off $400 dollars every month. We live in different cities, and are not married yet. Right now, I support him with several big purchases such as reclining bed to help him sleep (instead of having to sleep on a chair) and some other stuffs. Part of me is terribly terrified to be married to a life of caretaking, knowing what strength is required of me. Part of me is paralyzed not knowing what to do because of the affection I feel for him and the understanding that he, too, deserves to be loved and have someone by his side. He is a very good and caring man but suffers from many life traumas. In his younger days (he is 15 years older than me and in his mid 40s), he had been through a bipolar wife, a broken marriage, a lost custody, a sexual assault, and a life-altering surgery (his heart attack). The reason we are not married yet is that he can't even afford to divorce his wife, although they haven't been in contact for 10 years.

I feel terribly alone, paralyzed and unknowing what to do. His baggages, physical health and mental health force me to always be vigilant all the time - looking for signs of self-harm or outbursts of depression. Our long distance relationship eliminates physical intimacy. I feel very lonely in this relationship but do not believe that he doesn't deserve to have his heart broken. I'm not looking for a solution hand-out, but this is just the first time I've ever said these things out loud. I am not even seek comfort from anyone listening or reading this. Just maybe if you are in the same position or worse (hopefully better), you will feel less lonely.

Because if we are all lonely, then we are together in that too.

July 20, 2017 - 3:29pm
By July 7, 2017 - 5:50pm

I completely understand. My partner of 16 years was diagnosed with a very rare disease in 2012. For a few years prior to that we knew something was very wrong. At this point, I am 100% financially responsible for our life. I must do most things for her, open jars, laundry, dressing, and when we go out it is such a drain to have to handle a scooter. On top of this, she still falls frequently leading to other injuries to manage. I am tired, lonely, fearful, resentful and depressed thinking of the future. I am only 42 and cannot imagine the next decades being stuck like this, yet I haven't identified any alternatives. My focus is on earning enough to get full time help so I can have some downtime. Friends don't get it and my only other family members, my mom and grandma, also rely on me for emotional and financial support. I am at a point where I am looking for ways or other people that can emotionally support me and make me feel human again...and not just like a full time, on call caregiver. Emotional and physical intimacy have been missing from my life for 7 years...and I miss it.

July 7, 2017 - 5:50pm
By May 26, 2017 - 3:18am

Hello! My soon to be husband has two debilitating diseases that he has had for most of his life. For the majority of our relationship, he has had both of them under control and it has been a minimal effect on our relationship. But lately it has been really really difficult. Even on a good week we spend at least two nights a week unable to go out and do anything because he is in so much discomfort. I know that our future is going to be much different than my friends and I am ready to stand by him in sickness and health but I definintely need to develop a support system myself. My friends just can't possibly understand what we go through. I am hoping to find someone I can email with who understands what it is like and needs someone to talk to too. Anyway hope everyone reading this has a lovely day today :)

May 26, 2017 - 3:18am

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