New here and just looking for some support.

stubbysmom
stubbysmom Member Posts: 9
edited December 2012 in Caregivers #1

Hi, my name is Tonya and I wanted to introduce myself.  In advance, sorry if this starts to sound like a poor me post.  It's not meant that way, I just don't have anyone around me that really understands. 

I am a 37 year old mother of 4 children ages 5, 7, 12 and 15.  My 12 year old is ADHD diabetic so he is a handful by himself.  My hubby was diagnosed last year at age 36 with Rhabdomyosarcoma in the sinus region on the left side which wrapped around his left eye and went up to his brain.  His sarcoma was inoperable because of location.  They told us they would treat with radiation and chemo and that we could expect him to live 2-5 years.  He went through radiation and chemo but they stopped his chemo 4 months early because it gave him severe nerve damage.  When I voiced my opinion that I'd rather give him meds for nerve pain instead of having him die they told us that he'd be spending the rest of his life in the hospital which of course noone wants. 

Now that he's been off chemo since the end of May (his last treatment) I figured he'd start feeling better.  Not so.  He feels crappy all the time (some days a little less than others like today for instance), has a ton of nerve pain that medications help only a little with, major depression and his mind seems to be going.  He forgets EVERYTHING, names of familiar objects, what we are doing, not to her face but he even forgot one of my daughters names and she is a giant daddy's girl.

He does not show any cancer on his scans, he's had 2 so far.  Is this what remission (they don't call it remission yet) is like?  Is this the best he is ever going to be?  He missed my daughters conformation and her christmas womens choir concert which really hurt her.  How do I deal with stuff like that and help the kids? 

I'm trying to do my best for my hubby, raise 4 children, help my son with his diabetes and adhd, keep everyone steered toward positive activities and support my children with the things they like to do, run a buisness and find me time.  Not to mention one of my children has experimented with alchohol and marijwana.  It's getting overwhelming.  Is there anyone out there who can relate?  I'm the positive one in the relationship and it is getting very hard. 

Comments

  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #2
    Sorry

    I am so sorry for all you are going through. You have,more than your share on your plate. I cared for my husband for 6 years, but my children are grown. It was just him and I although my 90 year old  mother also lived with us for a year. My sons and church family were very supportive. I can only imagine what you are going through. You do need to find some help even if it is just for a few hours. It's ok to ask for help. Ask your dr., the hospital, the American Cancer Society,  or social services. When I finally asked for help, I actually had people thanking me for letting them help. They had wanted to do so, but didn't know what to do. Remember the number one rule of caregiving, and the hardest to do, is take care of yourself. it sounds to me like you could use some me time to take a walk  or go to lunch with some friends. Also, know that you are not alone. No one has had your unique circumstances, but many of us can feel your pain and frustration. Come here to vent whenever you need to. Sending you cyber hugs, Fay

  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #3
    you have a very full plate

    Dear Stubbysmom,

    I feel overwhelmed just reading your post. I don't have a lot of advice but I would like to suggest that you try to join a caregiver's support group. I joined one and I made some really helpful, valuable relationships. I still go to the meetings even though my son died in October and I'm not even a caregiver any more. There's just something so helpful in talking to people who are going through the same trials and tribulations that you are going through. 

    I hope that your family can help you a little too, maybe just come and keep you company, or stay with your husband and kids while you get a little break. I never wanted to leave my son but the few times that my family dragged me away were really beneficial for me.

    Please keep us updated on how you are doing. I'll be thinking about you and praying for you.

    Love and blessings,

    Cindy in Salem, OR

  • stubbysmom
    stubbysmom Member Posts: 9
    #4
    cindysuetoyou said:

    you have a very full plate

    Dear Stubbysmom,

    I feel overwhelmed just reading your post. I don't have a lot of advice but I would like to suggest that you try to join a caregiver's support group. I joined one and I made some really helpful, valuable relationships. I still go to the meetings even though my son died in October and I'm not even a caregiver any more. There's just something so helpful in talking to people who are going through the same trials and tribulations that you are going through. 

    I hope that your family can help you a little too, maybe just come and keep you company, or stay with your husband and kids while you get a little break. I never wanted to leave my son but the few times that my family dragged me away were really beneficial for me.

    Please keep us updated on how you are doing. I'll be thinking about you and praying for you.

    Love and blessings,

    Cindy in Salem, OR

    Thanks gals!  I don't know

    Thanks gals!  I don't know the things you gals have been through yet but it's one of my fears that it will come true sooner rather than later.  I am sorry about your son Cindy.  I worry about mine all the time because I hear of Diabetes related deaths quite often.  My neighbor had a son who died when he was 15 from cancer.  Unfortunatly we do not talk anymore because of other neighbor type issues.  We are not unfriendly to each other but we choose not to be as good as friends as we used to be. 

    I have to admit, I do have some things that I do on my own. My family also joins in at times but if I don't get time with other people once in awhile I get a little cranky.  I haven't been able to find any support groups in my area.  That's something like I was looking for here. 

  • stubbysmom
    stubbysmom Member Posts: 9
    #5
    stubbysmom said:

    Thanks gals!  I don't know

    Thanks gals!  I don't know the things you gals have been through yet but it's one of my fears that it will come true sooner rather than later.  I am sorry about your son Cindy.  I worry about mine all the time because I hear of Diabetes related deaths quite often.  My neighbor had a son who died when he was 15 from cancer.  Unfortunatly we do not talk anymore because of other neighbor type issues.  We are not unfriendly to each other but we choose not to be as good as friends as we used to be. 

    I have to admit, I do have some things that I do on my own. My family also joins in at times but if I don't get time with other people once in awhile I get a little cranky.  I haven't been able to find any support groups in my area.  That's something like I was looking for here. 

    It's gotten more hectic in

    It's gotten more hectic in the last week.  My hubby has not been feeling well for some time and has started having memory loss which our family doctor originally thought it was from depression.  He is pretty depressed.  He got to feeling really bad by Monday so we took him to the ER at the hospital where he gets treatment.  They did a CT and found 3 new tumors in his brain.  So now he goes in for brain surgery to get them removed and biopsied on Thursday.  It is so crazy and I have to stay sane for him because he is freaking out about it.  I would be too if I wasn't trying to take care of the 10,000 other things. 

  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #6
    stubbysmom said:

    It's gotten more hectic in

    It's gotten more hectic in the last week.  My hubby has not been feeling well for some time and has started having memory loss which our family doctor originally thought it was from depression.  He is pretty depressed.  He got to feeling really bad by Monday so we took him to the ER at the hospital where he gets treatment.  They did a CT and found 3 new tumors in his brain.  So now he goes in for brain surgery to get them removed and biopsied on Thursday.  It is so crazy and I have to stay sane for him because he is freaking out about it.  I would be too if I wasn't trying to take care of the 10,000 other things. 

    Hang Tight

    Hang on tight. That is all the advice I can offer. Hold on to each other. The roller coaster ride continues. Each new event can make you wonder what next. It really isn't fair! Somehow, we do hold on. You have already felt the next shoe drop and are wondering how many feet this horrible disease has anyway. My thoughts are with you. Hugs, Fay

  • Wbush71
    Wbush71 Member Posts: 2
    #7
    Sorry

    I'm sorry to read about your husband. Sounds like we are very similar.  My husband is stage 4 with a few months to go. I am 42 with three boys, 13, 10 and 3. The oldest is ADHD.   My name is Wendy and my email is wbush71@gmail.com if you would like to talk...

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