Losing It Emotionally

[cathyg]

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.

[krisse]

Hi --- I can relate to what you are going through. I feel that it helps me when I stop the stories in my head and look at the facts. Yes things have changed (same here with my husband) but why make it worst by thinking negatively is what I say to myself.

I also allow myself to be sad and cry --- I feel that it relieves my stress and makes me a better person then.

Doesn't matter what it is hard ... my thoughts are with you.

[Debbie Mc]

Cathy, I went through the exact same thing back in 2002 only difference is my husband had surgery to remove the tumor (T1) and it left him paralyzed from chest down. His health was going downhill very fast before surgery and that's why we didn't wait since the Dr explained what we could expect in the next 12 months and the fact that results would be worse if the tumor had time to grow more. We had private med ins at the time and very fortunate to have a fantastic neurosurgeon. Life was extremely hard for the first couple years, I felt exactly like you do now and life was hard, adjusting, no equipment, major change in income etc etc... BUT in 2005 after my husband started his med care with the V A it was like a black cloud was lifted off our shoulders. They have been fantastic as far as supplying absolutely anything he needs. Under the Aid and Attendant pension they even cover the cost of a full time caregiver. There are a lot of benefits you'll find hard to learn about if someone doesn't tell you. There is help and hope.. please don't give up. Would like very much to keep in touch with you!

[ambene]

Cathy, I am the one with a tumor and my health so far is not greatly affected. But I have a son, who is one of triplets. They were born very early and Austin died at 3 days of age, Will has profound mental retardness, motor and cognitive deficits and epilepsy. Sometimes he can only sit if strapped in his chair. Their sister is fine with the exception of epilepsy. I have found intense anger and sadness as I understand knowing the future is not what you envisioned. We have private insurance and no outside help. And have had to fight to get the basic equipement he needs as insurance doesn't want to pay and when they do it is at the minimums, leaving us medically poor. And now I have a tumor and wonder how I will be able to care for my son in the future and what will my husband do if things go south for me. I have found strength by just taking each day, sometimes each hour, 1 at a time. Not looking to the next hour, but telling myself I can do anything for 1 day, I can endure anything for 1 hour.

I understand your sadness when you look at your husband. I love my son with all my heart. He is such a precious child. But sometimes when I look at him, I don't see him, but what I had envisioned my family to be. The camping and hiking, bike riding, etc. It is what it is. I cannot not change it. It has taken me almost 6 years (they will be 6 in August) to reach this peace.

Let your husband know you love him and want to help him, help him meet his needs and try to find ways he might contribute to his community. Reading at schools is just one very needed way and you don't have to walk to do that.

Most of all, take care of yourself and your own needs. I have found out the hard way, that if I don't give myself just a little time for me, I can't fully be the mother and wife I want to be. When I feel there is nothing left of me, I am the most sad about my family. Refresh your own spirit, then you will be able to clearly more ways to help him. You will be in my prayers.
Andrea

[espelimbergo]

Hi Cathy,
I am a new member...reading your story seems like reading my own...I fully understand what you are going through..my husband just like yours is a veteran - 22 yrs in the army..and we've been married 22 years..the last year and half has drastically changed our life. Not only that he was initially diagnosed with transverse myelitis, which now seems like mis diagnosis since our new neurologist said it is astrocytoma not TM.. His love for outdoor makes it very difficult for him emotionally now that he is in a wheel chair..I understand how hard it is to watch a spouse that was once in so much control of everything and now need help in even the simplest thing as putting his socks on..I don't know if you are able to work after all this but for me work right now is the only thing "normal" in my life, it has been my sanctuary since my husband been in this condition..We have a son, who is a senior in college and I also have to remind myself that I need to somehow learn to balance my role between being a wife, a mom and work.. I realized during this journey that when I get to a point were I need to cry.. I just have to let it flow to release a stress off from me..I have about 45 minutes drive to and from work, and I cannot tell you how many times have I cried in the car until I can't no more...but in the end I felt a temporary release if emotion....Five years ago I was diagnosed with breast cancer, I had a lumpectomy, chemo, radiation and took pills for five years..been through all that and has been given a clean bill..but it feels like I handled it better than seeing what my husband is going through..maybe it's the love we have for our spouse that makes it harder..just hang in there.. Keep your faith ... I always believe that it will work itself out...