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Topic When to throw in the towel... Go to previous topic Go to next topic Go to higher level

By AnnieJ5 On 2017.01.25 22:47
I have posted a few messages about my husband and his attitude to me and the family and the saga continues. I have just found out that he is planning to have DBS surgery in a few weeks. No one in the immediate family was aware of this except his daughter. The rest of us were left out of the discussion and all the trips to the Dr to hear about what will happen. After talking to him tonight I was told in no uncertain terms I was not to be at the hospital because he did not need the stress. He intends to go home with his daughter for his recovery and not involve any one. He lied to me about the date of the surgery until I asked his son. He intended to have it and not tell me. Do I have any rights as a wife or am I just noise? His symptoms are getting worse, the tremors, the shuffle walk and the stooped posture but he still will not rest or eat decent meals. He is overweight, with high blood pressure and generally not in good shape. But I guess that makes no difference with the doctors. His ability to drive is being compromised. He will tell his son that he does not need to be driving on the interstate any more, but the hospital where he sees his neurologist is 3 hours away, so he drives alone. He has become pretty much a bully. He can do anything he wants to do but if you ask him anything he does not want to answer, it become a battle and we are berating him or stressing him and he is sick of me! He will step over a bag of garbage instead of taking it to the trash can, but tells me I don't support anything he does! He does not do one thing around the house but tells me "I hope you like living rent free in his house"! I keep up the house do the repairs and mow the yard basically to keep the house from getting in to much disrepair. Since he is able to leave 7 days a week and be gone 15 to 18 hours, I have stopped doing his laundry so he lets it pile up until the room that he sleeps in stinks. He will only bathe about every 3 days. I have had the attitude for so long that I will not let someone who is mentally and physically sick run me out of my home but it is getting harder and harder to stay in this nightmare. According to him I am always the problem, I don't support him, I don't care about him, on and on. He leaves the house every day by 6 or 7 and never comes home until 11 or 12. One night he did not get home until 2 am and I was so worried, so I got up and asked him where were you this late and his response was... in a nasty tone "where do you think I was"? I said... in a ditch, in the hospital, wrecked the car, how would I know, when you don't tell any one where you are. His response was "well I am home now"! I am so at the end of my rope. I have decided, I will not go to the hospital when he has the surgery. He has given his daughter his medical power of attorney so she can make all decisions and deal with him herself. I am at the point I really don't care how it turns out. She also has texted me in no uncertain terms that I am not to be there. She has as many emotional problems as he does. They are two peas in a pod and she believes all his lies. I have asked him what does the Dr say when you don't bring any family with you to the appointments and his answer was "they don't ask and I don't tell them anything". I have not been to the Dr with him in almost 18 months as he does not want the Dr to know how he has changed from all the medication he has taken for this disease. I sometimes think of suing the drug company for the damage this medication has done to our family, because at the beginning of this journey we were all in it together, but because of the drugs he is no longer sane. I guess now the question is, what do we all have to deal with after this surgery. I know it won't change his personality, a bully is always a bully. Has anyone had it and had good results. What are the side effects and risks. I am so angry with my self for putting up with his crap for so long but I refuse to be bullied. He wants me to leave the house so he can tell everyone that I left him while he had Parkinson so he can be the victim. I am ready to take the financial hit and lose everything just to be gone. I am 65 and so far in good health and don't want to spend the next ten years with this. I had surgery for cancer last fall which turned out ok and I want to live a happy life for what ever time I have left. I feel so sad and helpless, all I want to do is cry. Our family is ruined because of him and it is not repairable to any degree. I am sorry for the rambling, I truly just don't know what to do.

By LOHENGR1N On 2017.01.25 23:00
From what you say it does not sound like he is a candidate for the DBS. The Doctors need to know about His mental instability. I don't know what to tell you about how you can let the Doctor know without a war though. Maybe some of the caregivers here will have suggestions on how to make the surgeon and doctor aware of this behavior.

By lurkingforacure On 2017.01.25 23:21
I am so sorry for you, what an awful situation.

I would write a private letter to his doctor and let them know what is really going on. It is getting harder to meet the qualifications for DBS, as Al said, and I doubt if they really knew what was going on he would not be able to have the surgery.

You should document what you can, what he says and does, with photos if possible. I wish I had done this much earlier. I have found I cannot remember things I thought I would never forget, because every day my husband will say or do something, or several things, that are crazy but there are simply too many to remember from day to day!

Please keep us posted.

By FormerCaregiver On 2017.01.26 12:16
Not exactly new to the forum, I too have been lurking. I'm a former caregiver who got a lot of help from this forum when I was caregiving.

One thing that stands out to me as a former caregiver, is that maybe you should consider the time has come for you to give up the idea that you are a caregiver first, and find some legal advice on protecting your assets, etc. You don't have to decide to divorce but at this point it might be something he is considering and I'd guess his daughter if very likely to be considering. If you have wills, etc. too, it might be that he has already made changes to exclude you and you need to move to a more self-protective mode, than caregiver as someone else has said - I'd document, document, document. Definitely you can, maybe should, write his doctor - his doctor may have been forbidden to talk with you, but most will read what comes to them.

By carman96 On 2017.01.26 18:09
Please see an attorney to see what your rights are. You need professional advice to protect yourself.
I have heard of this before where the children or other family become their enabler and try to cut you out.
Don't leave your home, get advice from a lawyer first. You have tried to help him but he won't let you.
Good luck to you.

By VioletV On 2017.01.26 19:30
Annie,
Yes yes yes: document and photograph everything. Go back as much as you can remember and write it down. You have every right to send information TO the doctor. HIPAA prevents the doctor from communicating with you. But make sure you know that if they go ahead with the DBS without taking this info into account, and he has a bad outcome, you will be happy to file a malpractice suit.

Please contact an attorney and a domestic violence program to find out what your rights are. This is domestic violence and abuse even if he has never pushed, shoved, choked or physically threatened you. Are you financially dependent on him? Start sequestering your money NOW so that you have something to fall back on.

By AnnieJ5 On 2017.01.27 21:37
Thank you all for your input. For so long I have hoped things would change but I realize I have to now put myself first. I have started to document what I can remember and I will start to keep notes as this surgery takes place. I will talk to an attorney and see what my options are, and I plan to stay in the house until I have answers. He plans to go be with his daughter for his recovery after the surgery instead of coming home. He has told me he does not want me at the hospital on the day of the surgery.. he needs no one but his daughter! I could go but why bother. This is such a terrible situation and I agree it is mental abuse. I have separated my money from his and try to save as much as possible for this very reason.

By Trusting On 2017.02.06 20:29
Annie, I don't know if your home is in both of your names or not but don't be the one to leave.
If your husband leaves early in the am and doesn't come home till midnight then there really isn't much time to see him. Is there a way you can just agree to live in the same house but live as if you are separated?
I agree with the others that I don't really think he is having this surgery. If his daughter is willing to begin taking care of him, let her. Things are going to get a whole lot worse down the road. Just protect yourself. Get extra keys made for your house and car (hide a set) in case things should get ugly. Hide some cash too, just in case you need it. He does sound abusive and no one should ever have to endure it, Parkinsons Disease or not.
I've been on this journey for quite a few years now and from the beginning I have heard that sometimes a person with dementia can begin to get a little mean. I've told my husband I will take care of him as long as I can but if he ever begins to get abusive he will have to go into a home. I just want that planted deep into his brain and so far it's working. Take care of yourself.
Blessings,
Trusting

By Milly7821 On 2017.03.24 14:52
I completely understand where you are. My husband started cheating while we were going thru the diagnosis process. I threw him out! However, I am sure he has never cheated before this time in his life. None of it makes any sense. I too contemplated writing his dr.s because I know he is not telling them everything, so how can they make an accurate diagnosis? I am getting divorced and protecting myself first. However, I love this man deeply and would still be there for him if needed, just not being married and not being totally responsible for everything. I would also like some feedback on informing his physicians!

By RoxannH On 2017.08.04 12:37
I hate to say this but my husband's personality became much worse after DBS Surgery, he started yelling and criticizing me and our 11 year old daughter all the time. I decided to leave because it wasn't healthy for her or me to be around, and he was starting to be irresponsible with all of our money, I was afraid he would dig us into a hole we couldn't get out of. I have filed for legal separation. And, the thing is he has continually told me he doesn't care what I do--so that has made it easier. The hardest part is trying to explain this all to our daughter.

By AnnieJ5 On 2017.08.10 21:22
I also will be going ahead with the legal separation and try to see if I can find a way to move on with my life. I would have done anything to help him thru this but he has made his wishes known to his entire family that he wants nothing from us. So he will at some point have to live with the consequences of his choices. I will forever worry about him but the days of cursing at me and belittling will finally be over. I am selling the house because he seems to think he can come and go as he pleases because his name is on the deed. I want a home where he has no legal access. When I found out that he has recently again opened another credit card I knew I had to do something to separate myself from the financial ruin he is putting us in. He is so much worse after the DBS surgery and i wish I knew how to talk to the Dr without them telling him. But he is not going to tell them the truth so why do i even care anymore. He has also told me so many times" I don't care about what you do"-- so in a way it does makes it easier. This is no way to live and it is making me sick. Thank you for letting me vent. I know this is a hard road for all of us, and i wish it could be different. I am scared but looking forward to a new and happier life. Letting go of what could have been will probably be the hardest.


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