Time to grieve

General
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Hello My Name is Dave and my wife has lupus. She has been sick since about 2005. I had holding my feeling and grief for about 8 years. I posted this in the grieving group and was asked to post on the discussion. I can't speak for all spouses, family but I am sure this is how I feel.

Hello All, I have been grieving for about 8 years when my beautiful wife just couldn't continue being herself. I have watched her with the bowel problems, then heart problems and my favorite two years ago when her lungs function caused to require oxygen. I grieve every time she tells me she is sorry. I grieve for the life we could have had. I grieve that the medication is killing her and someday she will be gone. I grieve.

Thanks for providing a medium to share that...

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David

Thanks for posting this and sharing your feelings. We get wrapped up in ourselves and sometimes forget that our families may feel helpless to help us. I'm glad that you joined our group and are reaching out to support your wife. But more importantly LWL is a site for you too. I know at times, I feel alone, doctors don't understand me, and you may feel that way too as a spouse of a Lupie.

Hugs, Trisha

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Atleast you understand she has a problem, my husband is in denile, how do you get him to even talk about my problem, Lupus.

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Dave, I am so sorry that this disease has attacked your family too. It is hard for everyone that is involved with your wife. I am a child of someone that had multiple health issues and now I have multiple health issues including lupus. I have maintained for years that the family of the person with the health issues has it harder in so many ways. I still feel that way as I have a 40 year old son with severe chronic pain issues and honestly I suffer more watching him then I do with my own issues. My heart goes out to you and your wife, as well as my prayers. Reet

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Its very hard, sending you good thoughts

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Dave,

I have had SLE most of life, over 30 years diagnosed. Both my brother and I had been the sick kids in our family with him really sick....so i did not think of myself as being really that sick when compared to him. In highschool we began to compare some of ways we got sick...well my brother always said...he was going to die young. I think mainly pain was bad and back than only thing they were giving him was prednisone pills....so by age 27 his bones were that of 70 yr old. He had nodules in his lungs to this day i do not know what they were.... film coated lungs as well. He was on dialysis 3 than 4 days week...he still work full time and supported his family well.

Sure he killed himself because he loved his family so much...he pushed too hard and died at 34 with wife and 2 beautiful daughters ages 3 and 5....5 yr old graduated from kindergarten week after he died.

Here is what you need to know....he never even dreamed he find a woman to marry him with how sick he was much less have two beautiful daughters In those years he lived a lifetime by all the love he showed them and them him. I guess i was one of the few or only one that knew he never thought any of that would happen to him.

Since the (1980's) they have made huge strides in lupus...i have lupus they never knew for sure what he had...we just had many similarities. They know how to treat it so much better and continuing to make strides. His daughter married a genius of young man who has made it his goal to find cures or better ways to treat autoimmune diseases...and if anyone can this guy can...but more importantly he keeps me updated on the strides they are making or about to be public and it is amazing.

I hope you and your wife are not too old because there is huge chance her disease will be much more manageable in your lifetime.

As to now...i watched my brother, my mom and husband do it over me...my husband has his own disease now destroyed his ankles.... my nephew who is working on that cure has autoimmune disease himself now...and his wife my niece got malaria while in Ghana.

I know how your wife feels...i hated when we had to miss something because i was too tired. My husband to this day says he never really cared...he says he just never got about how much pain i was in till he got sick himself. My husband has made my life so much better by just having him in it....i was oxygen myself for about year and they do not know but i did not need it...that is so typical of lupus.

SO still take her out on picnics, movies or nice dinners.. whatever really makes you both happy. We loved hiking ...with ra in my feet and his ankles destroyed well hard now...but i am working on him getting some false ones and me...ah if eventually i need to take that helicopter ride out..so be it...so far i out stubborn the pain and refused to take away beauty of nature.

I hope you guys can share love and joy together...that is all that really matters. Have the best doctor for her...if she loves her doctor and you can see that they care for her that is one you want...if not find one that does..do all hard work about calling and asking what kind of doctor they are...online searches and reviews but do find one that she loves....we know they do anything to keep us alive and never just do what is easy but instead do what will save our lives longer.

i been lucky to have such doctors and they make all difference....but your love does it the most. I saw it in my brother, myself with mother and brother and sister...friends i known for years. love cures us ...do not give up hope...not for a long shot.

Sorry so long....you just sound so sad and i know ...how helpless and horrible it is to be the one just holding the hand....but now i know it means so much more than just that. if you could only know ....you your love is healing her.

and i am here if ever you just want to talk about her and who she is i love to know more.

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David,
I’m glad that you are reaching out and being open to us about your grief. I have been sick off and on for years before I was finally diagnosed withe lupus one year ago. I was forever telling my sweet hubby that I swear I’m not faking. He never questioned me, in fact, he was the one that pushed me to see more doctors. He went with me to every visit, affirmed my complaints and questioned (grilled) the doctors. Once we got the diagnosis, I think we both felt relief and grief. I have been on a roller coaster of meds and symptoms and he never complains, but I am always saying I’m sorry like your wife. I tend to forget he must be going through the roller coaster with me plus his own issues with work and stress. I am so grateful to be married to such a loving, caring man. I suspect your wife feels the same. After reading your post, I think I will be more aware of his feelings and help him through this too.
Warm wishes,
Adrienne

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Dave,
I’ve always wondered who had the more difficult job, me survive multiple autoimmune diseases or my husband having to work as an airline capt away from me for four days a week then coming home and doing everything around here.

I have recently decided its the caregivers who take the hardest hit. One thing that I insist on in our family is that if we have something planned as a family and I end up too sick

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I insist my husband and my girls go ahead. I tell them to bring me something back. I feel it’s important for them to carry on and not be held back by my illness. I also have some very good friends who jump in to help “mother” when I can’t. It takes a village with these diseases. Go find and make your village.

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I've suffered the ravages of lupus for almost four years now, ALONE! I'm still alive. I had no one to GRIEVE or fuss over me. My entire family and all my friends deserted me upon diagnosis. My husband is a jerk who constantly complains about me being sick all the time. I'm still expected to pull the full load of household chores as if nothing has changed. I keep my head down and trudge through it. If I can do it with no love or support then so can YOUR wife! Stop GRIEVING for her and sling an insult or two her way and give her a crapload of chores to do around the house and she, like me, wont even have TIME to even notice her lupus!

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Wow, ps, your situation makes me think of the Dear Abby question: are you better off with or without him?

I hope there is someone in your life, a minister, friend, or social worker, who has time to give you some understanding and support. If not, please call the Lupus Hotline 1-877-33 LUPUS and see if there may be resources out there to help you. Or, just call if you need someone to listen.

David, perhaps ps's situation can help you see what a blessing it is that you and your wife care so deeply for each other, despite the suffering.

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Dave, I'm so sorry your family has been hit with this unpredictable illness. I'm glad you're able to come on here and share your feelings. Have you ever considered counseling to help work through this grief? It's a rough journey, but know that we're all here for you!

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Dear PS, I am so sorry you are having to put up with that! It’s nothing short of WRONG! I was married to a man like that for 12 years (of hell)! I decided I didn’t want my children to think that was normal human behavior and left. For me it was the BEST thing. I actually went into remission for six years without the stress of not allowing myself to heal. I met a wonderful caring man who doesn’t even blink when he has to do everything. He cooks, cleans, does laundry, takes care of our kids and me all out of love without ever complaining! He grieves the loss of my function but never punishes me for it! Of course we would all love it if I were well. Since there is no cure for Lupus we do the best we can.

I am concerned about YOUR health. You are not here to be a torchured soul. You MUST take care of YOU! Have you tried to educate your hubby? Will he listen? If not, maybe you need to give him some tough love because he needs to pull his head out of his selfish a-- and be a real man and help YOU!

Sorry, but no human being deserves to be treated like that and since I have been through it I am very sensitive about it! Please do not be offended just know that there IS someone out there who cares! -Hugs Tina

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Dave - I understand your grief and thanks for sharing your thoughts. My daughter has SLE and Vasculitis. She was first sick at age 9 when she had hip surgery for an infected hip that turned out to be JRA. At 17, she had Bacterial Meningitis and almost lost her life. She suffered PTSD after that. I started to grieve for her at this point because she was not the same. I grieved for my loss of who she was, but was able to appreciate and be grateful that she was still here. She started to get Lupus symptoms in approximately 2008. Severe joint pain. She was hospitalized in Feb. 2009 and they couldn't determine what it was. She was air lifted to Mayo Clinic in the Fall of 2009. She was finally diagnosed in January 2010. At this point she couldn't walk, had lost all of her hair and was very thin. She started on Actemra in February 2010 and she is now in a drug-induced remission. I have watched her almost die at least four times. She is going on 26 years old. She is dependent on us for support. I started to go to a Cancer Support Group for Caregivers and Cancer Patients in February of this year. I have finally found a group that understands my grief and I understand their grief. I am so grateful for it. It's so hard to watch your child be sick. You might want to look for this type of group in your area. By letting your feelings out, you come to appreciate what you have more. Hugs. Carolyn

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Dear David, I am so sorry you and your wife have to experience this, but I am so glad that you have each other as you go through it. I’m going thru a divorce so I don’t have the supportive spouse, but I can tell you my mom had a massive stroke in her mid 30’s while under going surgery to have an acoustic nerve neuroma brain tumor removed. I have had the wonderful priviledge of watching my dad and mom both be there for each other as they grieved the life they loved together be altered. He helped teach her eat, walk, talk, bath and do everything over again and she helped him through his worry over her pain and trials. Their support and love for each other has made all the difference. This disease is terrible, but even though your spouse is sick she still loves you. In sickness and in health, even when the sickness is heart emotional sickness over watching your soul mate suffer. Let her be there for you also. I may not have been blessed with my own loving marriage, but I have been blessed more than my parents will ever know, by knowing that there are soul mates out there and the power of their love and support for each other makes even the worst health situation bearable. God bless you both and keep your marriage strong. Never be afraid to reach out and ask for help. Communication and support! Hang in there! I pray god richly bless you for being that man who loves his wife through sickness and health.

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thanks for sharing Dave I feel like my husband on the inside Is annoyed and can’t wait to get away from me and on the ooutside is saying super nice things

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I am sorry that you are having such a difficult time. I divorced my husband shortly after a back injury that was the match to the flame for my lupus. Honestly, because he was a lot like your husband sounds. For 3 1/2 years I stayed in a state where I knew no one for my kids, but after they were older I finally left and like Tinapet, had a period of remission. The constant stress could be a reason you continue to have flares.

You must concentrate on healing and finding peace.

Hugs,

DeAnne

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David,

You are a welcome addition to our little family. I think sometimes we forget what it's like on the other side.

My husband had the flu over the weekend and truthfully I didn't think anyone could apologize so much in so little time. But, because of my continued health issues I did my best not to lose my patience.

As you have read, not everyone has the support that you are willing to give your wife. Even my husband, who is wonderful (most of the time :)) looked at all of the literature about the disease itself when I was diagnosed 6 months ago, but I am trying to convince him to read a few threads like you so that he has a better understanding of the non-physical pain of lupus...the isolation, the guilt, the grief over the loss of our "old" selves, the fear and the many other things that affect a person with lupus.

I think you are terrific for making the effort to understand that aspect of this disease.

As I have told you, I do hope that she chooses to join our group as well as I think it may be a great way for her to know that there are those of us out here in space that really do know what she is going through.

Hugs to you both,

DeAnne

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Hello Dave , sorry to hear - hope that your wife do get better !!! smile I know that it is hard at time to bare the vision of losing someone special - but enjoy the moments that are here now with her , she really need you !! Hang in there ...Beverly L.

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Hello Dave, Welcome to our group and thank you for sharing. I have only been going through this a couple of years and my hubby has been so helpful and supportive, I just feel so blessed. We have gone through times when he seems angry and annoyed, and I felt it was directed at me, but he finally broke down one night crying and shared all of his feelings and emotions. He, too, has been grieving, and I didn't realize how much until that night. He is annoyed and angry, but not at me, at the disease and how it has changed me and how it has changed our lives. And most of all, the fact that he can not "fix" it and make me feel better...it tears him up to see me in so much pain.

I was so thankful he was able to share how he felt and we can not talk about it more freely so he doesn't have to keep it bottled up. I hope that by your sharing...with us, with your wife, with anyone you feel comfortable with...will help you as well.

It's wonderful to see such a caring loving person and I'm glad your wife has you for her support! Take care of yourself and we're here for you if you need to let it all out!

~Cheryl