Family and Caregiver Schizophrenia Discussion Forum

Coping as a Significant Other


#1

My husband and I have been married for 9 years, and for the last 1.5 years, we have been dealing with psychosis. At first we thought it was just one episode, caused by medication, and it would go away. A year later, he relapsed, and no we don’t know what the future holds.
I feel like I’ve moved into the role of caretaker, rather than wife. I go to his doctor appointments, we talk about his symptoms, I found him a therapist. Every day is consumed by his illness. He comes home from work crying several days a week, and sleeps as much as possible. I struggle just to get him out of bed to spend time with me.
I’m trying to adapt and I’m trying to be supportive, but it’s wearing me down. I try to take care of myself, and do things for me; I seek out support from friends, but no one really knows what it’s like. I haven’t even told my family what’s going on, and I worry about their reaction.

I’m just wondering how other significant others have coped with the transition from being in a two way relationship to being a full time caretaker. Is there a way to get our marriage back? I know it might be different, but I’m just losing hope that we can have anything.


#2

I really don’t know. You just have to let time do its thing and see if he gets better. I really hope that they do. Being the partner of someone with mental illness means that sometimes you play more than one role.


#3

I’m okay with playing multiple roles; I’m afraid of only playing one role as care taker. I can’t be his salvation and his only source of hope and comfort.


#4

I understand you. He just might need some time to recover and get back on track. He’s taking medications and also has a therapist, which is a lot more progress than many of us here have had in the past and present. Just hang in there, I know that the future can bring fear and uncertainty, but you just have to keep faith that he’ll make a recovery soon and that things can get back to the way that they were before.


#5

First, I know how challenging that can be and I’m sorry this is your reality but it could be so much worse. I learned in NAMI family classes to expect the 5 stages of grief and to be kind to yourself.

Try not to hold expectations around telling your family. If they are like mine, they will disappoint you and I have a great family. MI is so different and there is much stigma. If we love someone enough to be there for them when times are hard, that is true unconditional love. Sometimes as I do the mundane things my family requires, I tell them I love them. It is my love in action.

Then there are the days when I’m not so graceful like today when my son dumped a bowl of oriental coleslaw out onto the fridge I just cleaned and the floor I just mopped yesterday. It’s hard to keep composure sometime but it is worth it and don’t let anyone tell you otherwise. :heart:


#6

I opted for divorce …


#7

@Bunzo I do not care for a significant other like a spouse or anything, only my adult sz son who lives with me and is 32 -but I can identify with that feeling of not wanting to be his everything and I really am just that. I would love to just be mom to an adult son where we mutually visit and share dinners and interesting conversations and do things that typical adult kids do with their moms (heck, I don’t even really know what that is) Anyway…like @Mom2 said, it is true unconditional love when you except the person on any terms regardless the situation and stand by them no matter what and it can be very worth it in the long run. I guess it can be different with us moms and our kids, there isn’t a real divorce option with parenthood. All you can do is take one day at a time, celebrate the little victories when they are there, sometimes just getting up in the morning is a little victory, for my son and I shared laughter is a treasure when it happens. There will always be good days and bad days and you have to take care of yourself as much as your significant other needs cared for. Welcome.


#8

As caregivers we need to have good coping skills. For some that’s through religion, family, friends, music, art, hobbies, exercise, etc.
We need to avoid being burned-out. We need to take care of ourselves and make sure we are happy. …Easier said then done.

My family is also not good at accepting bad news. Sometimes it’s better not to tell them everything; especially female family members who become very emotional. But you do need an outlet. If you don’t have anyone you do need to look to your family (as long as you know they love you).

His health affects your happiness. If he was healthy then he would be more stable, and thus more independent. His independence is your goal.
Seeing a therapist and taking medicine is great. Him working is awesome. But perhaps the medicine needs tweaking,. Maybe his stress needs to lessen; cut back hours at work. Maybe he needs to have better coping skills; help him remember.

If you are unhappy with the doctors/therapists he is seeing then consider looking for a new practice. If by some chance my SO and I stay together, I’m going to take him to Penn medicine in the city since it’s one of the best psychiatric teams in the country.

As you know (from my thread) I’m in a similar situation. I’m thinking what’s best for my SO, and honesty I think us separating would be best for him. There’s research that schizophrenics in poor countries actually do better then in rich countries. Stress is a major trigger for my SO and as much as it saddens me to forget all the could-have beens… he may lead a more productive & happier life in his home country surrounded by dedicated family members, a familiar cultural, and a place w/ less overall stress. .

My situation, however, is unique. Think about what would be best for your SO. If you are his best option then please keep on trying. But if he becomes a danger to you, or to other living thing then that’s where I would draw the line.

If he depresses you to the point you want to hurt yourself then also please get out.

You are in my thoughts, xoxo


#9

Thanks, everyone, for the replies. I do believe that I have to go through the stages of grief, and I also believe that those stages aren’t linear. I accepted that he was schizophrenic back in April, even though he didn’t hear that from the doctor. It took him several more months before he understood what he might be up against. I feel like I went through an acceptance phase back then, but now I’m back to bargaining and anger. It’s hard to talk to anyone else about it, because they don’t really understand what it’s like. There is a definite loss for the relationship that was, for the future we thought we had. I’m not sure if I’m yet ready to accept what the future may hold.

I know that I’ll never leave. I think about life without my husband, and it seems empty. I know he’s doing his best and by all accounts he’s doing really well. He’s even supportive of me getting help from others and taking the time that I need. In so many respects, we are really lucky. I guess maybe I am going through a new level of grief and eventually I’ll get through this period, too. We’ve been making some long term plans, regarding meds, and some contingency plans, and I think that helps both of us feel like there might be some hope. Some days, it’s just really hard to hold on to any hope that things will get better.

We’ve decided to tell my parents at Thanksgiving about what has been going on. We’re not sure what exactly to say, because I know they will be judgmental. I’m afraid they’ll tell me to leave him, and I’m hopeful that they’ll understand some of our choices and be more supportive of them. My brother’s step son was also diagnosed schizophrenia, and they were so confused and said some of the stupidest things, like, ‘At least he has his high school diploma.’ So, partly I’m afraid that they will compare him to my husband, even though their situations are completely different. I’m really glad @lmc that you mentioned sometimes people do better in less stressful countries. I didn’t know that; my step-nephew is from Nicaragua, and they have considered sending him back there. I was worried because I feared that he wouldn’t get the care that he needs, like medication. But, maybe it would be good for him, if he has a support system.

For those of you who are parents, @Mom2 and @Catherine, what do you think it might be like if your child said they were dating or married to someone with sz? There’s a different sense of loss that comes with that, as well. What sort of hopes do you have for your children, regarding relationships, if any?
Thanks!!


#10

@Bunzo (fair warning I am a writer by nature so you might want to find an easy chair and a beverage…lol )

My sz son did date a girl with sz a few years back. Initially I accept all people and don’t use facts about them to judge the real person inside. I try to give that inside person a chance before making any judgement calls. So, having said that, initially I adored this girl, she was so sweet and smart and funny. Neither my son nor her, could drive so they would make a date and I would give my son the money for the date and then drive them to the date, usually a local restaurant, public park or mall. Then I would wait for them to call for a ride home. For a brief time it seemed to be going very well.

I still laugh remembering the one time I went to a restaurant to pick them up and they came out from behind the restaurant which was a vacant grassy field (in the summertime) and they were covered with dry grass, all red faced and giggling. Long story shorter, the girls parents were her legal guardian and I have the opinion from interacting with them that they were very hard on her because they were very devout Catholic and they expected that she remain “pure” at all costs until legally married,she was 28 at the time and my son was 26. Needless to say that I think their expectations under the circumstances were somewhat unreasonable. I tried talking to them and I told them that I saw our kids as being “serious” (aka making out every chance they got), with each other but not necessarily considering marriage so early in their relationship and when I mentioned the story about them coming out of the field all disheveled and laughing, they said I was mistaken and that I totally misread the situation that their daughter was a “good girl”. I just knew that my argument that “Girls just want to have fun.” would not fly with them, I never discussed the subject again with them.

Oddly enough she seemed very lucid and capable when she was with my son and I. Yet later after dropping her off at home she would quickly become delusional and very unraveled which I derived from her 30 or 40 nonsensical phone calls to the house afterwards. I don’t know the whole story of her home life or how things really transpired. I just know that in the days and weeks that followed she was found wandering the streets naked, she was also found walking in the rain through a creek bed barefoot and catatonic and she sat in front of our local library and said she was going to sit there until she married my son. Her parents called me and my son to come to the library to talk her into going home with them. We did and she went home with them.

This is where my son really took notice, he said to me, “I like her a lot Mom, but I never said anything to her about being married” It was obvious to me she was seriously declining and I had just gotten a half way level grip with my son’s condition. This was going from being fun to being very stress filled for him. Her parents were already asking me to advise my son not to return her calls anymore. They explained she was going to be getting ECT shortly and they were moving her to a relative’s home in the country. I agreed to not assist the kids in getting together anymore. My first priority was my own son.

It did hurt my son to not see her again and I had to remind him how ill she was and how she had to be much more stable before she could deal with a relationship of any kind. I reminded him how much I liked her and how I supported them being together but now she needed to hopefully go and get better and we could not help her with that. I told him our new “family rule” about dating was that the person simply had to be at least ‘as stable’ as he was if not maybe a bit more so. I thought based on our experiences and the outcome that that was a reasonable thing to strive for. I am not sure if he fully agreed on it or understood it --but he never argued with me about it.

Today my son does not seem to feel like girls will like him and that speaks to me that his self esteem has suffered over the years. He doesn’t believe me when I tell him how smart and funny and handsome he is because as he says, “Moms opinions do not count” But just the other day he ran into an attractive young lady from an AA meeting he use to attend and they talked and laughed maybe 30 minutes outside of a store while I was shopping and I pointed out that she seemed very interested and very happy to see him. He just said, “yeah she’s nice.” One thing I can’t get him to understand (yet) is that in order to meet someone or maintain a friendship he has to put himself out there and be seen other than in his own home or with his mom all of the time and he needs to return phone calls which he does not (yet).

Of the negative side effects of sz isolation and apathy are the worst I think. Especially when the sz person does not even recognize they are isolating and being apathetic. When you asked about my hopes and dreams (for him) that’s a tough one. When my son was a child I dreamed what all moms dream…graduation, dating, maybe having a family a career…everything. Learning about sz and his specific conditions (my son is also on the autism spectrum and has a history or atypical seizures which are now controlled) I try to take my hopes and dreams and squish them into tiny time slots of no more than a week to a month at a time.

This month I hope his mood stays even and we keep stable on food and exercise and that his dentist visit goes well and we have have a Happy Thanksgiving. Next month will be other things and so on and so forth. Making grandiose long term plans is a fool’s game in my opinion…with sz you are setting yourself up for disappointment because the illness and the course of treatment is never a straight line…this illness makes you be mindful and grateful day by day. I feel that my son is already a success because he has beaten so many of the statistics that defied him even making it to 32.

Overall I wish my son many happy life experiences, many smiles and I hope over time a few good solid friends…maybe in years to come a partner of his own to love who loves him back and maybe some part time endeavor/job or steady hobby. I don’t plan for any of it though, I support him, cheer him on and try to guide him forward on his good ideas and try to help put a brake on his not so good ones…one week or one month at time.

This relationship with my son will always be a labor of love for me. It is an integral part of my life but as the years pass I am realizing it is not my entire life (as it once was) as I develop outside interests and new outside friendships and work on my own hopes and dreams. In spite of all of the ups and downs between my son and I…I do find that taking better care of me now (separate from him) makes me better able to be (and feel) more present and more positive with my son all of the rest of the time. I hope my story helps even a little. :slight_smile:


#11

Our son tends to get serious with girls right away and this usually turns them off. His first psychotic break came after a girl that he cared a lot about wasn’t interested any longer in him. He met another girl in the hospital with schizophrenia. He still asks about her and wishes he could see her again.
He’s really never had a long term relationship. He is so loyal though if he were to find the right person.

If he were to be in a relationship with someone with schizophrenia I would not object because I know and have read that a caring relationship is the most important element for ones mental health.

I also think my son sells himself short and has low self esteem due to his illness. He doesn’t drive and when we do go out or we take him to a museum he sometimes is drawn to younger teenage girls. My husband and I both reinforce that they are likely too young for him but this might be because of his age at the onset of his illness I’m thinking.

He says he would like to have children someday but I have to tell you I would be concerned. We take it a day at a time and try not to think too far out in the future. This week our goal is to pick up after ourselves and do our own laundry for the week.

He is working on a building for a homeless man with some men from our church and that is a positive blessing. I know that he is limited on what he can do but being in that environment I think will be healthy. He does tend to walk away but he’s in an area where it is safe. They indicated he really helps them carry materials. I’m going to encourage more of this volunteer work even if I have to pay him a little bit of money at the end of the week.


#12

I have been taking classes on optimal health with a Naturopath in San Diego and have learned that diet is a big contributor to neurological health. You should go to his web site and download his 60 day diet challenge and encourage your husband to try the diet. My Naturopath’s name is David Getoff and you can find his web site on Google.


#13

My 21 yo son would love ti be dating, but something has changed as his illness has progressed. He either rushes things (I am guessing) or fears the stress if trying to please someone else so he retreats from the potential stress. I would be ok with him dating someone with a mental illness if they were actively trying to manage their illness and had a strong support network of their own.


#14

Unconditional love is extremely difficult when a loved one has a serious illness. Is unconditional love the same for a spouse versus your child. There are days when I feel like walking away from my daughter and let her fend for herself but a larger part of me can’t do it because I gave birth to her and we bonded immediately when she came out of my womb. Is it the same with a husband? I’m wondering if I was married to a person with schizophrenia who has serious problems with rational thinking I probably would walk away to save myself. I feel selfish and terrible for saying it …


#15

From time to time, I wonder the same, from a wife’s perspective though. My mother-in-law once told me that she feels so frustrated that she just walked away…so do not feel terrible about that.


#16

NAMI support meetings are a blessing


#17

Hi Bunzo, I have been married to my sz husband for 7.5 years. It takes a heck of a lot of patience to muddle through, and I get worn down too. We just went through 2 days of psychosis and anger outbursts and I let it block out everything good in my life. It seems like I am always on the verge of leaving him, but. I don’t really want to do that. Things would be far worse without him. Sometimes I feel trapped and I think why me? Why did I have to love someone with this awful disease? But I know I am making a difference in my husband’s life, and the more I give to him, the more I get back. So, I’m venting here, and that makes me feel better.


#18

Learning to live with being miserable isn’t the same as things getting better. On the outside, it seems like everything is going well. Others say things like, “He seems to be doing better. It seems like things are okay. He seems normal.” And I know they’re right, and things are so much better. People say, “So what if he’s on medication the rest of his life? He can still be normal.” Again, they’re right. But they are missing so much more, because they can’t see it. They don’t live it. They don’t know.
We strive for acceptance, and some days are better than others. But we aren’t trying to accept what everyone else thinks we are. It’s not about the diagnosis, or about medication, or quality of life. My husband hates that phrase, because it sounds like a dying pet. We’re not trying to put our life back together. We’re creating a whole new life from scratch. It’s like going through a tornado, and then thinking you’re still going to live in the same house. Even if you rebuild it exactly like it was before, it’s not the same. It can’t ever be the same. And everyone else tells you that the house looks fine, but you’re the one building it all by yourself. You’re hammering the nails and putting up the walls, while they just walk by every once in a while and give some encouragement.

I decided today that my greatest weakness is my strength. I can hold it together, I can keep going, I can be the cheerleader for my husband, and constantly care for him and build him up. But some days, I just want someone to take care of me.


#19

I think maybe my husband and I have a little bit of survivor’s guilt. By all accounts, he’s doing well and things could be so much worse. So there’s this guilt about feeling bad, when things aren’t as bad as they have been, or that they could be. I feel like I don’t have a right to be sad, and I should only be grateful. And we are immensely grateful for the health he does have. I just need to remember sometimes that it’s okay to mourn the loss of what we don’t have.


#20

My husband often asks me if I’m still glad that I married him. He tells me that it’s okay to leave if I want, because he wants me to be happy. I told him to stop saying these things, or it might start giving me ideas. I agree with you, my life would be so much worse without him. I decided to marry him, knowing this risk, and I never regret it. Sometimes I feel like, if my only purpose in life is to take care of him and ease his suffering, then I’ve lived a meaningful life. I do my best to be his saving grace, and I know it helps him tremendously.
And it helps me to come on here, and hear that other people are feeling the same thing and going through the same struggles. In the end, it’s our kindest to others that makes the difference, including friends on here, and our spouses.