Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by kim55 on Thu Nov 22, 2012 08:08 PM
THis is my 3rd Thanksgiving with my husband of 38 years who has had a GBM IV for 25 months. While I am so thankful for all the miracles that God has provided me with, holidays with this disease are the pits. My husband Zeb is 58 years old and after 22 months had to be put in a nursing home, because I could no longer take care for him at home. My children and I decided he needed a team to give him the best care, thus the private nursing home that costs me between $7500 and $8,000 a month. He is a Coast Guard Veteran, we have 3 different insurances and I still have to pay the entire amount out of pocket. I can only do this because I borrowed from our life insurance. He sleeps most of the day, and some days are definately better than others. He may be alert and can somewhat converse with me, or he lays in his bed with a vacant stare. I am living with my son and his wife, leaving my home in NC to be able to afford this wonderful home that he is in. I wake up each day at 3:30 am with nothing to do at that hour and finally head to the nursing home around 6:00am. I have alot of anxiety each morning, not knowing what I will see when I get there. I take lorazapem for anxiety, but am doing a slow taper on that. I also take cymbalta for depression. My husband is my soul mate and this is literally making me physically ill. I have 2 wonder Hospice counselors that do help, but I always think about the future and what will inevitably happen.
Before his diagnosis, he was a successful electronics engineer who had never been sick. All of a sudden he had a grand mal seizure and here we are. After I lose him, I will have to go to work for the first time in my life and try to support myself since I'm using my life insurance money (I'm 58 years old). I try not to think about the future, but unfortunately, I'm a planner, and living with GBM you just can't do that.
I sometimes wonder if I will ever feel normal again, after losing my life partner, because even though thankfully I still have him, it's the lonliest time in my entire life. Being with my son helps so much, but there are just things that you share with your spouse that you can't share with anyone else. For the first time in my life, I am scared of being alone.. and I mean in my son's house or anywhere after dark. I think this is part of my anxiety and it just stinks.
After 25 months, I'm just mentally exhausted, but I'm so Thankful that I can love my husband and kiss him each day, and I pray for strength from my Lord and mercy for my precious husband.
by jon4156 on Fri Nov 23, 2012 02:00 PM
I think many of us share fear and feelings you have expressed. I often wonder myself how people who lose their spouse, go on afterwards. We won't know until we get there I suppose but hopefully some of those people who have recently lost their husbands will reach out to you. If I had an answer for you I would surely give it, but for now I am floundering in the same boat with you.
by siblingof on Fri Nov 23, 2012 05:50 PM
by phyllischarles on Sat Nov 24, 2012 01:35 AM
I wish that I had SOMETHING OR THE ONE THING to say to you that could make this easier for you. But I don't. This was our first Thanksgiving with this GBM. But something about your post made me want to respond to you. I just hope you find comfort wherever comfort finds you. And know that you are not alone in your fears. And your prayers are not yours alone either. This website has been a Godsend for me. being able to express all of your feelings and concerns and plain ole venting has been the joy of this site. Take comfort in knowing that you were there for him til the end. I hope you find peace.
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