Husbands brain cancer, dementia, changes in personality. What do we do?

Follow
Share

I was with my husband for almost 30 years. He is now 54. After 2 years of a misdiagnosed brain tumor, and 7 years of caring for my husband who has Brain Cancer stage III with mixed gliomas, and Dementia, it is a miracle he is still alive. He takes the highest dose of Namenda made, Prozac, and other meds for the damage from 4 surgeries and radiation. Instead of celebrating him still being alive, it became a nightmare for me. My sons, now 19 and 21 blame me for not being able to make their Dad "happy", so that he was content at home. I would come home with lists from doctors of do's and don'ts and that just made me the enemy. He loved to pick on me and admitted that to his doctor right in front of me. I can't begin to tell you the surreal nightmare it has been here year after year, never knowing if he was going to make it because of bad MRI's every 3 months, and his behavior. He turned into another person after the 1st surgery. He is basically missing 2/3rds of his right frontal lobe. On the last trip to UCSF 7 months ago he decided to take off and hooked up with his estranged family who had done nothing to help us with him after all of these years. They were kicked out of the hospital during the first surgery (2007) for bringing liquor to him and being so loud and obnoxious. They have never liked me because they think I'm too much of a "goodie two shoes". According to my attorney, Divorce was my only option, and I am in the middle of that with my husband's brother, as I know he does not have the cognitive skills to answer questions. I have cared for him, quit work to care for him (no pay for spouses), spent my retirement(s) for medical bills, medical travel, living expenses, etc...I have found out over the summer that he had been selling tools, assets, planning his "escape", and our so called patient advocate had been helping him. He is now in California and scheduled for a 5th brain surgery at the end of this month. He stayed there after the 4th surgery, hooked up with the long lost family, and has never looked back. He rarely calls his sons, although when he does he says he is homesick. We all know he is not getting good care, but don't have any say about that any longer. Since the divorce was filed I have spoken to him a few times, and had to say a final good-bye at our oldest son's graduation, under very stressful circumstances.. All the legal aspects are being done through his brother. Has anyone ever experienced anything like this with their spouse and dementia? Was it the disease and dementia or me being naive? He could really put on a good show and sound great at times, but if someone was around him enough they could see the "real him". Thank goodness there are a few people that had seen that and knew I did the best I could. I got a letter from once of his doctors thanking me for all my years of selfless care for him. . Any advice? The heartache from this has been and still is unbearable, and my son's attitudes hurt the worst, although we are now starting to try and build a relationship again as the truth comes out about how bad the dementia was, and how worn out I was. I honestly did everything I possibly could for this man that I knew how to do because I believed in the "for better or worse" part of our marriage. I now have nothing but debt, a huge mortgage (mortgaged to help pay medical expenses), and 52, worn out, and am trying to figure out what to do from here. Any advice would be greatly appreciated. I don't know how to find "closure" on this. Sometimes he would not remember getting married or having the boys. It has been so surreal for so long, it is hard to figure out how to start over and to understand the man I married was gone long ago from this illness. I guess I don't really even have the right to "worry" about his upcoming surgery and lack of care from his remaining family. It is very hard on our son's too. They know he is not getting good care and of course worry about him. What do we do?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
8

Answers

Show:
I haven't wanted to think about it, because I have been so wrapped up in taking care of my mother and her dementia, but I too think my ex husband has/is developing an early form of dementia/Alzheimer's. Many years ago we had been researching many articles about Alzheimer's and what causes it or leads to its development. At the time we understood that a lot of the medications for heartburn like Nexium showed a link as did medications for high cholesterol. We took my mother off Nexium after being on it about 6 years when it is only intended for a short use like 6 weeks. I then found out my ex-husband was taking one of the worst high cholesterol medications according to this study. I talked to him as we had remained very close friends, about changing his medication. He spoke to his doctor to ignored his request and even told him not to listen to "these people."

Well as I said we had remained very good friends, we went on vacations together, to movies, dinner, we did everything together with our daughter and we had great fun. As the years went on I began to notice a slight difference in him, he seemed like he was mad at me at times, for no reason. He was here with us every other weekend and called in between. When our daughter turned 18 he completely stopped coming over. I never understood why, it never seemed like it was an obligation to him, but something he looked forward to. Our daughter was hurt but just let it go, never confronting him.

He called me one night telling me how depressed and lonely he was and wanted to know if we could get back together....after 18 years apart. I asked him why and he replied why not? I told him I would date him to see if there was still anything there. He was different, I could not put my finger on it, but his entire persona was changing. The way he spoke to me was rude at times and I knew something was amiss. We were having a good family time, but it did not work out between us as a couple.

Now we go for very long periods of time not talking at all, even if he comes to pick her up at the house, it is as though I do not exist. Then all the sudden he will start calling me or texting me. His behavior is just "off" something isn't right and it seems like he is working his way into dementia or Alzheimer's like my Mom. He is still taking this medication and says his doctor says it's fine, so he will not change it. My heart is breaking as I see him change and yet his youngest sister has told him that she will take care of him in his old age, but honestly she has no idea about what is going on and she is flighty most of the time.

He isn't my husband, but a part of me will always love him as he is the father of my one and only child. We have a lot of good and bad memories but the good ones stand out more than the bad. I am almost positive this is what is happening to him as you can see it progressing and he is only 61. They do say that these diseases begin decades before we normally recognize the problem.
Helpful Answer (1)
Report

Parts of your story are very familiar to me! My husbands uncle, who was like a father to him, recently had a major stroke. He had been having small strokes over several previous years that caused brain damage/vascular dementia that went diagnosed until the major stroke. His dementia got worse. During the last two years we have lived with him and noticed that he wasn't right. He didn't trust us, but if someone else told him the same exact thing, he would follow their advice. Since we were living with him, we would see the weird things he would do and ask him why he was doing those things. He would get angry at us for asking. He accused us of trying to confuse him. At the time we didn't know what was wrong and had no power to get him to see the doctor about it. After his major stroke his mood swings got worse and he said all kinds of things about us. He would say that he gave us $100,000. but the next day it was $50,000. He also made lots of other statements that weren't true or that happened long ago that he said happened yesterday.

Long and short of it was that his friends thought we had been upsetting him and had CAUSED the dementia! They accused us of trying to make him angry and of stealing from him. Because he had no POA or guardian, they were able to get him to say that he wanted one of them to take that role and not his only family. They got us evicted from the house and tried to get a protection order but had no real evidence for this, so it was thrown out. They believed every word he said! They don't realize that dementia causes mood swings and often the sufferer lashes out at those closest to them. They are paranoid and blame their caregivers for all kinds of things - but they aren't necessarily true.

I can empathize with the feeling of being pushed away by people who may or may not even care about this person they have now taken control over. The uncle must now depend solely on his friends (some of whom are leaving for winter in Arizona!) for ALL of his care! He needs 24/7 care... He has said, in court and in person that he "never wants to see us again". This goes against everything we thought we knew about him! It's incredibly painful for us, and especially for my husband. He is so angry at his uncle and wants nothing to do with him anymore. We have discussed fighting the friend's control, but it's expensive and then we might have an angry uncle on our hands that doesn't want us to care for him. I'm not really sure what it is he wants because I think his friends are pushing their opinions on him....

Personally, I have found it best to let go of the need to control any part of the situation. You just can't! If you read up on brain injury as well, those types of injuries cause a lot of behavior and mood problems. I just think to myself that the uncle isn't really in control of his mind like he would be if he were well. He wouldn't be making these decisions. Your ex is not either; in reality he's not working with a full deck (to be a little blunt!). The person you married and knew so well is gone, probably forever. Maybe you should put him to rest - have a little ceremony or some kind of goodbye and imagine that he has passed. It's so difficult because the person in front of you looks, sounds and even says many things that they used to, but they aren't really themselves. It helps to not be around them and to cut your ties. It's not his fault, really. That's what I keep telling myself! And we keep away, even though it hurts, because that is what's best for everyone...

Good luck and know that you really are not alone although each of our paths are unique. We are all here with you!
Helpful Answer (1)
Report

You lived up to your marriage vows....For better for worse, in sickness and in health...you did it all and way, way more! You need to be celebrated for your love and concern for your husband. Everything you did was out of love for him but some people will never give you the props you deserve.

I can imagine that you are hurting very deeply as well because you have been wronged by the man you loved and you stood by and you cared for and you have gone into very deep debt for. It would be easier if you did not still have very deep debt that you have to work your way out of while he is living the balance of his life in California. Has anything been arranged for all his possessions to be sold to help pay off HIS debt? This is not debt you would have incurred without his illness.

NO ONE UNDERSTANDS what you have gone through unless they have lived your life by caring for their loved one like you have. Your sons are young and naive... and do not have the life experience that you have to understand that you gave EVERYTHING for their father. You worked your butt of tirelessly and indebted yourself to your own detriment to care for their father, they should be thanking you and someday, hopefully they will grow up to understand what you did and come to you and thank you for it.

Now what do you do with yourself? You have to begin a new life, because you still have a lot to give to yourself, your kids, and the world. Hopefully you will meet and fall in love with someone else in the years ahead because you deserve to be loved again.

If I were you and any of my bills could be written off via bankruptcy I would do it. You need to clean out your life and begin again, even if it means moving to a new house, I would do it. You are still pained by the thought of your husband and his condition, you need a complete new start. You need to replace him in your heart and begin moving in a new direction. Somewhere out there, there is someone looking for a goody, goody two shoes and you may just fill the bill!!!

God Bless You! There are so many issues and levels to deal with and you will make it, but you HAVE TO CHANGE DIRECTION NOW and pray for healing, guidance and most of all forgiveness so you will not carry any grudges in your heart.
Helpful Answer (2)
Report

2goodboys, I have such respect for you, you took your vowels seriously! I have found I heal quickly when I know I'm loved, surround yourself with as many people who you know love you. Self love is sustaining, you deserve to feel self love. It' time now to recapture your life make a new life a better life than you could have imagined. Try to envision how you would like that life to be. I'm working on this myself right now, it's difficult when you haven't thought about self in a long time, because your so worried about everything and everyone else. It's time to heal, people are in our life's at times only for a season. Try not to hand on to something that is out of your control right now. I say this for myself as well, especially now. Both my parents choose to stay in Virginia my mother never wanted to leave her mother and father who had been dead in the ground for 10 years, I know hard to believe but this is the convoluted logic just the tip of the ice burg. Surround yourself with people you know can and will love you through this. A friend told me today that I must believe I'm the most important person right now, because I've let my mental, emotional and physical health decline, and I still have life left to live. I know it's hard to believe there is still a good life left to live after all you've been through but know you are a good, kind, gracious women who gave it all she had for a long time. If nothing else you can believe that everyone who has responded we know you deserve and will have more, better, different, the healing will come! God Bless
Helpful Answer (2)
Report

Wish him well, and get on with your life. Namenda and Prozac will do nothing for dementia and a brain tumor and blaming yourself for any of his behaviors is wrong. You can have compassion, but your health is what is suffering and you best take care of yourself and your sons and let him take care of his own life. It will be short.
Helpful Answer (1)
Report

Hugs to you 2goodboys. A very difficult place to be in. I have never experienced this. I would concentrate on creating a calm and peaceful home for you and the boys. I wouldn't rule out some family therapy if you can swing it. The three of you need to heal. Claim some space in your life that is for you alone and use that space to rebuild your energy. Best wishes.
Helpful Answer (2)
Report

SNAKES ... One & all (no offense to snakes)

If caregiving isn't the motive, then it's usually about money or outright control.

They've done you wrong, certainly, but you must let go and move on. Living "there" in your thoughts will only serve to further destroy you.

Your goal should be to reinvent your life and recover your sons.
Helpful Answer (2)
Report

2goodboys, you have had it rough, but I feel that you have only the option that you are already doing -- cutting the strings and rebuilding your life. You have devoted so much of your life, and I know that it hurts. But you have the rest of your life to put it back together. In your shoes, I would close the door on what is going on with the ex and concentrate on paying bills, rebuilding savings, and patching the relationship with the sons. I feel that anymore emotional energy spent on the ex would be wasted energy that you need to put into yourself. Your ex's brain was probably so damaged that he was no longer the man you married. And he has made it plain that he doesn't want to try to keep your relationship going.

When you are 52 it feels like you are old, but 52 sounds young to someone in their 60s and older. You have plenty of time to build a happy life. Go for it, girl. :)
Helpful Answer (5)
Report

This question has been closed for answers. Ask a New Question.
Related
Questions