I'm having DBS surgery in August. My husband is not supportive at all. In fact he said some so hurtful things to me. At this point I don't even want him at the surgery. Am I going to have problems in the surgery because of the emotional state I am in. It's not gonna get any better with him. But this is not a good time to leave. I just don't know what to do. Has anyone dealt with anything like this? In fact he said some hurtful things to me. At this point I don't even want him at the surgery. Am I going to have problems in the surgery because of the emotional state I am in. It's not gonna get any better with him. But this is not a good time to leave. I just don't know what to do. I hope this makes sense at this point I'm so upset.

25 Replies

  • Dear BaileyT;

    Of cource you are upset.

    And I don't think this is the time to do anything drastic.

    Is there an agency you could call and ask for help?

    Like Adult Protection Services?

    How about family and/or friends?

    Find support for yourself, go through the surgery, and then when you have recovered, then you can consider your options.

    You are in my prayers.

    Love and hugs from Eva


    Keep checking back here.

    Others here will have wonderful advice for you.

  • Dear BaileyT,so sorry to hear of your troubles,can only send my love and best wishes and hope that your surgery will make a vast improvement to your symptoms.Take one thing and day at a time,the most important thing is your health and wellbeing,but wait until you are stronger before you make important decisions,you're in my thoughts and prayers,big hugs,BettyAlice xxx

  • Talk to your Dbs team. Tbe nurse consultant psychiatrist are all there as part of the process.

  • Hi

    Sorry to hear that you are going thru this. Please see if there is someone at the hospital that you could talk too.


  • If at all possible, try to find friends or family who can support you through your recovery rather than returning to an environment of further abuse and recrimination from a poorly equipped (mentally/emotionally) husband. You, of course, deserve better...

  • Love and hugs. xx

  • wise replies to you. Do you have a support officer . you have more that enough in your plate . knowing you have someone you can speak to who you feel is in your side (we all are ) might go someway to help you .

    was your relationship good before your diagnosis . it's hard enough to understand and love alongside even if it is .

    we are lucky to have a good relationship not everyone has obviously . I recently had a meeting with the social worker for Johns assessment . the first thing she asked me was . What is your relationship like ?? It took me aback but know what she meant , then she told me that such so many people she goes to are on their own because of breakdown .

    coming in this site you can see from both sufferer and carers supporters partner spouse how it can affect .

    it's good you have opened up . you go for your treatment and be strong tell them your concerns . Big hugs xxx

  • I am concerned that you now express that you are going to have problems with the surgery. I invite you to contact your team soon while there is time before your scheduled procedure. Surely they have had other patients who also have anticipated problems before surgery. And have strategies to assist you in dealing with your concern(s) before having the procedure. I wish for you to have a most successful outcome from your planned procedure. That going into the procedure you envision the joy and comfort you will experience from the resulting improvement of your symptoms BillDavid

  • I was in that position. Look at it in a different way. Treat it as a break from him. Relax if you can prior to the operation.

    If possible, say you live on your own. That way, they might not rush you home.

  • You poor dear. Is there someone else you can stay with while you are recovering? You need and deserve a peaceful recovery -- not in the presence of someone who is a source of anxiety and hurt. I, too, urge you to share your concerns with your medical team. Bailey, do you mind my asking what part of the country you live in? Some areas have more social resources than others. In any case, please keep in touch!

  • Bailey, I'm so sorry. Do you have a relative or friend that will be with you during the surgery? If not, talk to the doctor ahead of time and let him/her know your concerns.

    Sending you thoughts, prayers and love.

  • These are all very good replies and you should take their advice,

    The one thing I can tell you is that you will want to have someone around you that will care and help with small things while you recover , I wanted quite and I required sleep to heal if you can not get this at home , talk with your team so they can help get something set up. You have great thing to look forward to, this operation completely changed my life!!! I will be praying for you !

    Please talk with your team that's why they are there .

  • My question is why is your husband not supportive? Perhaps he has legitimate concerns or is afraid of potential outcomes but doesn't know how to express himself well? Just asking?

  • First you need to tell this all to your doctors they are your support team and must know this in order to support. This is a tough surgery without support. They will know of options and can help. I m doubtful you are the only patient they have had without support. God bless and let us know how things go. You say it is not a good time to leave the husband, but it sounds like he left you a while ago. Be safe.

  • There is no doubt that Parkinson's is very difficult for all members of the family with some handling the realities better than others. Although we haven't yet taken advantage of the resource, there are several Parknison's groups that meet around the urban area where we live. Also, the option of counseling, together or separately, might be something to consider. I am the caretaker for my husband who has PD and I know that I am often fearful about his illness, perhaps more than he is. Sometimes my fears translate to irritation for which I usually apologize. Transition is different for everyone so perhaps your husband is still getting used to the changes. Certainly not an excuse but perhaps an explanation for bad behaviors. Good luck with the DBS.

  • What a shame! Are you sure that this is the right time for your surgery?

  • Never mind your husbands attitude....he's not the one with the PD and he's not getting the surgery. Forget about his comments....they are NOT productive. Pay attention only to those who are supportive.

    Tell your medical team and ask them to make arrangements for recovery at a rehab in -house a nursing home Just as if you had no one at home to care for you. We live in Florida and this often happens when an older patient only has another older spouse at home who really can't or won't care adequately for them post-op.

    God be with you.

  • I am sorry about the added stress. You may want to talk to your doctor,or call the nurse Monday and let them know. They will decide what is best. Another thing, some people show anger and strike out because of fear. I pray that all works out for you.

    Please let us know how you are doing. I care.

  • i have the same problem with my partner emotionaly she does nothing for me just critisise me when im wrong or if i forget never any praise never any love i think its her way of handling it like ur husband they just lash out it doesnt help you or me i feel like leaving but to where? im not much help to u but i can put my arms round u & make it a bit better

  • As a caregiver I can only say, we make mistakes, we say things we should not, we do not understand. I feel your pain and it breaks my heart. No matter how hard I try sometimes I just dont get it. It gets lonely, the relationship changes, the roles change,

    It's up and down, and he's down and frustrated. He does not mean to hurt me, he loves me. It's hard on both. Life has changed for both, we can either take a day at a time and try to turn to each other not against. I do not know but could he be scared?

    The unknowns are our lives. One day at a time, sweet Jesus. You do what you need to do, get support from others. Get a good counsoler specified in PD. Lean on friends and family and go for it. God bless you.

  • BaileyT, so sorry to hear that your husband is less than supportive has said hurtful things to you. Remember it is about you and not him. Do not let anger towards him stress you as his behavior is more a function of his fears than anything else. Try to feel compassion and forgiveness in your heart for him and use the medical staff you are working with for advice and support. If you let anger enter you will increase your stress and make it more difficult to enjoy any benefits of this procedure .... keep whatever is good about him in your heart and forgive his weakness.

  • You will be surprised at how strong you can be when needed. Try to stop seeing the whole picture, that's not important anymore. Travel every moment of your life a step at a time. Save your energy for when it's really needed. Speak to your husband, ask him how he is feeling and then listen. If you are still uncomfortable with your husband and your surgery talk to your Dr.s. Your state of mind is important for any surgery. You are important, You are cherished, You are loved.

  • Thank all of you so so much. I don't feel alone much I'll take your advice. Right now he's not even talking to me so I'm pretty much just on my own. I do have a very strong family support system and friends as well, and all of you. Thank you for the prayers and so much of love.


  • Emotion has a GREAT deal to do with DBS. There generally is euphorIa which presents

    right after surgery. That's because the DBS electrodes are affecting the area in the brain where they have been placed.

    Then the fun begins when the programming begins. You MUST be in a healthy state of mind. Everyone is different. If you have trouble after six visits, I can hook you up with a brilliant troubleshooter but you will have to get on a plane to see her.

    Caregivers have it rough, so give your husband some credit. He's probably terrified.

    Get to a good counselor BEFORE the surgery. He or she, if good, will be a great help,

    but it is important to be as relaxed as possible before, during, and after surgery. I can't

    stress that enough.

    I would be glad to talk with you privately. Good luck. You are in my prayers.

    My husband and I separated right after the diagnosis. We both came around after

    about a year. I was infatuated with someone else, that burned out; I brought a suit

    against the company I worked for who had never heard of ADA, we won it and everybody left; including the VP of HR. It was ugly but brought changes to the company that were necessary. And we are back together, still have issues but we work hard on our stuff. He is an AA member and that helps.

    Let me know how it goes.

  • I too am scheduled for DBS in late July.

    It is important for you to remain positive with regard to your decision.Your husband may not be totally clued in to the positives of DBS and the resultant. Improvement in your quality of life you can expct aftrr thr operation. If the positives didn't outway the negatives therr would be no point in doing the procedure. It is certainly a way of gaining a few more years of improved

    quality and hopefully research will bring us something new to help us out.

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