Facebook Pixel

affairs of the heart Join this Group

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

By 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 HERWriter Guide January 12, 2017 - 1:39pm

Thank you for this update.

You have every right to feel frustrated and annoyed because your situation is incredibly frustrating! 

I hope your husband's meds continue to help him improve and feel free to talk to us anytime.

Susan

January 12, 2017 - 1:39pm
By January 12, 2017 - 7:42am

hi all, sorry for a late reply but with Christmas and everything its been hectic.
An update to my story is, that my husband has now been given biologics and they are working amazingly! However although his pain is halved he still seems to have lost his personality, the man I met and married. He is always tired and forgets everything so I'm still left being the single parent just with an extra child. He wont go to the drs for depression because he says he doesn't want to kill himself!! its so frustrating. I do everything, he is not very car minded, neither am I, but when his car broke down it was me on google looking for reasons me looking for parts and garages me telling him what to do how to do it. Its like he feels owed because he has this disease.
As I said his pain and movement has got a lot better but things aren't the same, I don't know if they will ever be again to be honest.
I'm glad I posted on here as I do now feel that although yes he has the pain, I am suffering too and he has to acknowledge that like I have to for him. when he has days off work and is self employed and doesn't get paid its me who has to sort the finances, he doesn't have any of that stress, he literally has to get up go to work and come home. I'm mum dad wife and husband and its not enough.
I'm 37 and feeling like my life is over, this is how it will always be carer to my kids and him getting nothing back really.
I'm hoping things will improve he has only been on this new medication for 2 months so we shall see.
I just want to say to you all, hold your head up high, don't feel guilty, we are human and because we are the ones holding our families and lives together, they may have the pain or the symptoms but we are dealing with everything else and that's bloody hard!.
We all deserve to let off steam and if anyone would like to chat further feel free to reply.
take care xx

January 12, 2017 - 7:42am
By December 28, 2016 - 10:37pm

Hi all
This is my first post so bear with me as I might ramble on.
My husband and I have been married for 35 years. We have gone through a lot together including raising 3 sons. My husband was an alcoholic, while my sons were growing up. He was good at hiding it from them but no so much with me. From this I believe he developed high blood pressure and then heart failure about 11 years ago. Since that time, his health has not been the same. Besides the heart failure, he has had 3 heart stents put in, prostrate removed due to cancer, skin cancer, and 2 kidney surgeries due to cancer. He now has about 1/2 a kidney. He has always been a glass half empty type of guy with little to no patience for much and since his heart failure has had depressive episodes. Most recently, he had 6 painful limpomas removed from his back...no cancer thank goodness.
He has been on disability for about 1 year and I am now the lone breadwinner. I am an elementary teacher with a ton of responsibilities. I carry the insurance at this time, do all the bills, talk with doctors because he does not ask the right questions and doesn't understand what doctors are telling him. He has lost some of his mental capabilities over the years.
Anyway, all of this has caused me to become bitter towards him. I do not show that bitterness to him but it is still there. First of all I feel it is his fault he became ill because of his drinking. His behaviors caused this roller coaster of bad health. That might not be true at all but it is what I feel. I also don't feel sexually attracted to him anymore. I seem to be the constant giver in this marriage and sex is just more giving which I don't have the energy for. Also as someone else mentioned he is all consumed with his illnesses and pain. He is always negative, never wants to go anywhere/do anything, and he barely talks to me unless it is about his illnesses. This is all making me feel lonely and frustrated, and as I said, bitter. I do love him and feel committed to him because of our Catholic marriage. I am a strong faithful person, but even a strong person can only take so much.

Thank you for letting me ramble on and thank you for this site.

December 28, 2016 - 10:37pm
By December 26, 2016 - 6:55pm

I feel the same as do many of you explain. My husband has a vascular brain tumor. It was found just before we met. He had minor head aches that were treated by medication. We got married and had two children. Life was going how I hoped it would. As the years passed his condition got worse. We are now 12 years into our relationship. He has been disability for almost four years now. He is sick almost everyday. He spends most of his time in bed. I feel lonely and like a single parents. I'm starting to feel like it's causing me to be depressed. How do you others make it through?

December 26, 2016 - 6:55pm
By December 21, 2016 - 10:44pm

Hello to all you strong and inspiring people,
This is my first post. Im here because when I read LINDAvera's post I thought I was reading about my own life. I have been with my parter for almost 3 years. Ever since we started our relationship he has always been unwell. He had a parasitic infection about 2 years ago but has since had testing and he has no sign of any parasites. He is suffering from a undiagnosed illness at this stage. We have seen so many specialists and it feels like he has had every test done under the sun to try and get a diagnosis. He suffers from, tingling, dizziness, numbness, nauseousness and the list goes on. His triggers seem to be walking/standing and eating. He has altered his diet to gluten free to rule out coeliacs disease. It is at the point that friends will no longer invite us to gatherings or events because we have turned down so many. I get excited if he feels up to going out to dinner, or the movies or even to the grocery store. There are good patches and bad patches, when its good, I forget about the bad times and I am the happiest person alive. However, when the bad patch rolls around (more often than good) it dawns on me again. I feel like I'm not strong enough to stay positive for the both of us. I feel like my energy levels are being dragged down. When I look at him I see a different person, he is so consumed by his pain. Because my partner hasn't been diagnosed yet, I feel like the worst person in the world as I sometimes wonder if he has developed hypochondria. He seems so in-tuned with his entire body that the tiniest thing will set him off. Sometimes I will go to touch his face or his nose and that will be too much for him. Im 26 and he is 28. I am worried about the future, he has often said that this could be it for us, and that he may never get better. He says that playing xbox takes his mind off his health but it is starting annoy me. We spend most of our time in seperate parts of the house, he will be on the couch playing xbox and ill be in the bedroom. We used to be a team but its feeling less than that now. I love his family and him so very much. The thought of him being healthy gives me butterflies because he is the most perfect human being for me aside from his health issues. I don't want to end it, I don't have the strength or will to do it. But what if in ten years time I regret staying with him, and grow to resent him even more...?
Thank you for taking the time to read my story. I hope you can reserve judgement as I feel horrible enough for writing all of this down.

December 21, 2016 - 10:44pm
By December 18, 2016 - 10:40am

I am so relieved I found this group. I have been very hard on myself all this time because I thought I was being selfish and basically a bad person. I have been with my boyfriend 3years and a half. At the beginning, as most couples, we were extremely happy, discovering and getting to know each other. I had recently gotten over a bad breakup of a verbally-emotionally- and lastly physically abusive relationship. With my boyfriend, I always noticed he was not necessarily fit all the time (I was 28 and he was 33 when we met), stomach problems, headaches, extremely tired, etc. We did some trips together and he would always get sick, so all our trips have been stained with him not feeling well or enjoying. We anyways moved in together a year and a half in the relationship, and his headaches got worse. He said he had them as a kid and was even in the hospital for a couple of months. The year and half we have been living together have been hell for me. He has chronic migraines, with more than 15 attacks per month. Every day he has extraneous pain, he is extremely sensitive to sounds and smell, so I have become a recluse in my own place, a place we were looking so much forward to finding and making our home. None of that happened, we barely did something for the place and "our dreams" because everyday since we moved he has pain, when he doesn't he's recovering from it. We barely talk, no sex for months already, no intimacy, I cannot move freely around the house, whenever we are in the same room he has this dying face, which I feel terrible about because i can only imagine the pain he is going through, however it is really depressing and negative. I dread everyday coming back from work to see him, I am frustrated I cannot do anything at home or whatever I do I hear him complain. The whole house environment is dark and depressive. He have had really horrible episodes of him screaming out of pain on the floor saying I don't get him, understand him, or I cause him more pain because I put more stress on him and that means migraines. I spent like 1 year not talking to anyone about how serious this issue has become and how it affected our relationship. I feel we have no relationship anymore, he always says that he needs understanding and "kisses", and I oblige with the kisses when that's possible. I don't know what more understanding I can provide. We are always separated in the house, he is downstairs and I am upstairs. He watches TV almost the whole day, or listens to music, he has a 2hour/day job (3 times a week tops) and his dad helps him financially, I am getting my PhD degree next year which I presume puts pressure on him. He complains of how frustrated he feels he cannot do anything else, and I understand and suffer that with him too. It is just so sad. I have come home driving and crying at the same time because how terrible I feel, besides lonely and unloved. I am and have always been a very positive person, accomplished, hard worker, alive and happy, and this relationship has made my life so grey. I stayed with him all this time because I hoped something "might" change, a new treatment or something that actually works on him, but that hasn't happened, and I am almost hopeless.. We have talked (very dramatically: he starts crying uncontrollably) of moving out, which might actually help us by taking the relationship-pressure of him, I almost have to promise I wont leave him, and that living separate could remove a lot of stress, but it hasn't happened yet.
I want to escape and lived my life far from this situation. I truly love him so much, and loved the idea of us together, creating a life for us, planning our future, he is and has been the sweetest person I have known, and I suffer when I see him suffering so much that I feel I live heartbroken all the time.

December 18, 2016 - 10:40am
By December 11, 2016 - 8:57am

Hi this is my first post to discuss my situation.

My husband has some sort of undiagnosed illness. He has been symptomatic our entire relationship (11 years - tinnitus, fatigue, brain fog). He is in the process of getting tested for Lyme disease, but if he tests positive he tells me his going to kill himself since is would have been untreated for 15 years and he likely wouldn't get better.

Things have gone downhill over the past couple of years. This year has been especially bad. He's so hopeless and depressed and I'm having a harder and harder time coping with everything.

We have two small children and I'm currently on maternity leave. That leaves me to do all of the financial and household chores. Luckily I had my parents here and they help when they can, but I'm worried that his illness is affecting me and that all of the stress is going to overwhelm me and cause me to have issues too.

I love him and try to support him, but it's hard when he keeps telling me that he wants to die. He tell me how tortured he is and not knowing what's happening to him is the worst. He's had so many medical tests done and everything comes back normal.

I'm just ever so sad and just looking for some support.

December 11, 2016 - 8:57am
By December 11, 2016 - 8:47am

Hi LINDAvera,
I feel like I'm in a similar situation as you. Have you had any luck in getting a diagnosis for your partner? My husband has been in for the last 15 years or so. Basically he's had some sort of undiagnosed illness for our entire relationship. He had been coping pretty well until a couple years ago and now he's so consumed by his illness and his certainty that it is going to kill him. I worry that he's suicidal. It's really starting to weigh on me.

When your partner got tested for Lyme did he do it through Western medicine or a naturopath? I am also in Canada and I've been told that the western medicine test is not very accurate and can have a lot of false negatives. My husband is currently waiting for the results of his Lyme test from the naturopath, but it'll take a month.

Is the new medication working for your partner?

I'm glad you shared your post. It makes me realize that there are others going through similar problems.

December 11, 2016 - 8:47am
By December 9, 2016 - 5:43am

This post moved me and made me feel like I'm not alone in this. Everything you said, I am experiencing too. I particularly related to what you said about sexual attraction and feeling like you are suddenly with an old man. I am older than you, but I still feel I look much younger now than my partner, who also has Ankylosing Spondilitis. Any shred of sexual attraction I felt for him has gone. i still care about him and feel terrible about the pain he is going through, but the romantic connection is gone, vanished. And I'm young enough that I could still have love/sex/romance in my life. So I am torn. Do I give all that up and stay with him? My partner, like yours, is always depressed; his expression is one of pain and sadness. When I come home after work I feel heavier than when I was there. The atmosphere is oppressive. I know he's aware of it and feels bad, but he tells me it's not likely to change as his condition is only going to worsen. The biologics did nothing for him. I sincerely hope your partner finds relief with them. In my mind, I am constantly planning my escape and have even found the apartment I would move to. But after 30 years together this is a hard hard decision to make. I know I will continue to look after him and keep contact and be his friend, but I long for a lighter, freer atmosphere. Luckily our children are grown and independent and they support me 100%. I hope you can find some peace in all this - you are not alone!

December 9, 2016 - 5:43am
By HERWriter Guide December 7, 2016 - 2:28pm

Hello

Have you considered spiritual counseling?

Susan

December 7, 2016 - 2:28pm

Group Leader

Related Topics

Description

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

Location

New Castle De

Privacy

This Group is Open to all EmpowHER.com members