Post by cathyg on May 9, 2012 17:43:48 GMT -6
Brand new here. First a little background, I guess...
My husband has an ependymoma in his spinal cord. He had surgery in 2010, and at that time his doctors thought they were going to drain a cyst but then discovered during surgery that it was a mass. They couldn't remove more than maybe 1/3 of it without paralyzing him, so it's still in there. It's located right at the juncture of the cervical and thoracic. He has since had radiation treatment, but the tumor actually seems to be larger than before the treatment.
My husband is at a standstill. His physical condition is seriously debilitated and worsening. He can no longer work and is disabled. His mental state is sliding as well. He is a veteran and the VA hospital seems not to have much clue what to do next. Having no clear treatment plan or real hope has robbed him of his drive and vitality, which once was beyond compare.
And here's where I'm losing it, not as his caregiver but as the woman who has loved him for the last 25 years. I'm watching my husband deteriorate before my eyes, physically and mentally (depression and an increasing unwillingness/inability to leave the house) and I DON'T KNOW WHAT TO DO. And it's driving me crazy. I'm on the verge of tears constantly and sometimes I feel like I'm drowning in despair and can't even catch my breath.
I think I'm grieving... I feel like I'm finally realizing that the life I envisioned for us is never going to be the same - never going to happen - and it makes me so sad and mad I can't get past it. And oh, the guilt. I'm tearing myself apart with guilt over being so upset about MY life not turning out the way I wanted it to, when he's the one in so much pain.
The other thing that's wrecking me is the fact that when I look at my husband my overriding emotion is sadness. I don't want to feel sad about him! I want to feel loving and supportive, not pity! But there it is, and I don't know what to do with it.
I guess I'm just looking for any advice or anything you all can offer as far as managing myself through this whole thing while staying as supportive as I can to my husband. This has been a few years journey so far, starting with his pain and increasing fatigue and then the surgery and everything that followed. I'm just feeling really crushed all of sudden.
Thanks.
My husband has an ependymoma in his spinal cord. He had surgery in 2010, and at that time his doctors thought they were going to drain a cyst but then discovered during surgery that it was a mass. They couldn't remove more than maybe 1/3 of it without paralyzing him, so it's still in there. It's located right at the juncture of the cervical and thoracic. He has since had radiation treatment, but the tumor actually seems to be larger than before the treatment.
My husband is at a standstill. His physical condition is seriously debilitated and worsening. He can no longer work and is disabled. His mental state is sliding as well. He is a veteran and the VA hospital seems not to have much clue what to do next. Having no clear treatment plan or real hope has robbed him of his drive and vitality, which once was beyond compare.
And here's where I'm losing it, not as his caregiver but as the woman who has loved him for the last 25 years. I'm watching my husband deteriorate before my eyes, physically and mentally (depression and an increasing unwillingness/inability to leave the house) and I DON'T KNOW WHAT TO DO. And it's driving me crazy. I'm on the verge of tears constantly and sometimes I feel like I'm drowning in despair and can't even catch my breath.
I think I'm grieving... I feel like I'm finally realizing that the life I envisioned for us is never going to be the same - never going to happen - and it makes me so sad and mad I can't get past it. And oh, the guilt. I'm tearing myself apart with guilt over being so upset about MY life not turning out the way I wanted it to, when he's the one in so much pain.
The other thing that's wrecking me is the fact that when I look at my husband my overriding emotion is sadness. I don't want to feel sad about him! I want to feel loving and supportive, not pity! But there it is, and I don't know what to do with it.
I guess I'm just looking for any advice or anything you all can offer as far as managing myself through this whole thing while staying as supportive as I can to my husband. This has been a few years journey so far, starting with his pain and increasing fatigue and then the surgery and everything that followed. I'm just feeling really crushed all of sudden.
Thanks.