Suddenly became caregiver Feb 2010

elvyra00
elvyra00 Member Posts: 8
edited March 2014 in Caregivers #1
It was a normal day at work for me until the call came through. My mother had called 911 and the EMS told my sister she may have had a stroke. I immediately wanted to scream but I was quickly grabbed by a few co workers and was taken to the lounge.I had no idea from that day that I would be faced with the most devastating time of my life. I drove the two hours to the hospital and met my two sisters and othe family in the waiting room.The only thing the doctors were saying still was possible stroke. She was in intensive care 3 days and then released in another 2 days.At that time the doctors were not seeing the tumor that was growing in the left temporal lobe of her brain.She was referred to a neurologist who immediately had her see a neorosurgeon because now after the second MRI they were seeing something troublesome. The surgeon immediately had her have a full CT scan to rule out any other cancers or problems.After that he confirmed out worst fears that this indeed was a tumor but he needed a biopsy for a definate diagnosis. We were all pretty much in shock at that point and with the prognosis of a tumor and her age we were at a loss as to what path to take. The doctor initially wanted to do an awake craniotomy to be able to save her speech ability as much as possible but a week before the surgery she got worse and was admitted to the hospital..They immmediately did another MRI which showed the tumor had doubled in size since the last scan 30 days ago. They decided to forego the original plan and scheduled her for a craniotomy the next day and she would be asleep.She tolerated the surgery very well and it has been about 2 weeks. She has no speech but is able to do most things for herself right now.My two sisters and I are the primary caregivers. She begins radiation next week along with a low dose chemo pill. We are all very anxious about her starting treatment without knowing how she will do. I feel most of the time like this is a nightmare I will never wake up from.....

Comments

  • AKAngel
    AKAngel Member Posts: 74 Member
    #2
    You're not alone
    I sympathize with what your life now feels like...most of us have lived in the 'nightmare'...that's why we're here. Sharing each other's perspectives of this horrendous dream we can't wake up from is the best that we can do for non-physical support. It's good that your mom still retained most of her capabilities to do things. Definitely would advise looking into hospice, they can help out a lot, not just for your mom but your entire family. Prayers and hugs to you....
  • elvyra00
    elvyra00 Member Posts: 8
    #3
    AKAngel said:

    You're not alone
    I sympathize with what your life now feels like...most of us have lived in the 'nightmare'...that's why we're here. Sharing each other's perspectives of this horrendous dream we can't wake up from is the best that we can do for non-physical support. It's good that your mom still retained most of her capabilities to do things. Definitely would advise looking into hospice, they can help out a lot, not just for your mom but your entire family. Prayers and hugs to you....

    My mom
    radiation begins soon and not sure what to expect.Second guessing ourselves as to whether we should even put her through the possible side effects and possible decline in quality of life.Kind of worrried about Temodar drug as well with someone her age.I hate these inpossible decisions
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #4
    elvyra00 said:

    My mom
    radiation begins soon and not sure what to expect.Second guessing ourselves as to whether we should even put her through the possible side effects and possible decline in quality of life.Kind of worrried about Temodar drug as well with someone her age.I hate these inpossible decisions

    Hang in There
    Hi Elvyra,
    Welcome to the world of caregivers. I was a caregiver for my dad,he recently passed from esophagel cancer with mets to his liver on 3/9/10. He was doing very well until the mets came. Being a caregiver is one of the hardest jobs you can have. It is good that you have your sisters for support. You will all need to team together. You will go through the second guessing thing many times throughout this journey. You have to try it, just to see if it will work. If he does great, if not...you know you tried. Quality of life is a huge thing. This is what I went through with my dad. Yes, he was with us, but he was bed ridden, he had bed sores, he was in constant pain, he lived on pain meds. The pain meds made him so out of it. This is no way to live. This is why we granted him his wishes,and gave him all our blessings to stop the fight and give up. If your mom gets to this same point, you will know what to do.

    You are not at this point now, so take this one hour at a time, ask alot of questions, get the answers, have a strong faith, keep in touch. You are doing all of the right things. Never be afraid to ask for help from anyone. Prayers are being said for all of you.
    Tina
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #5
    elvyra00 said:

    My mom
    radiation begins soon and not sure what to expect.Second guessing ourselves as to whether we should even put her through the possible side effects and possible decline in quality of life.Kind of worrried about Temodar drug as well with someone her age.I hate these inpossible decisions

    Welcome but Sorry
    I am sorry to welcome you to these boards. I am glad you found it, but sorry you had to do so. The shock and awe you describe is pretty normal. I think I walked around in a fog for at least a week after my husband was diagnosed. You don't say how old your mother is or what the prognosis is. Whether or not she continues treatment needs to be her decision if she is thinking clearly. Although my husband was told that his cancer would be life shortening, he chose to buy as much time as possible. He bought much more than any of us expected, but he had to make the choices on treatment options. You may have a better feel for things after treatment starts. Just hang in there and know you are not alone. Fay
  • elvyra00
    elvyra00 Member Posts: 8
    #6
    grandmafay said:

    Welcome but Sorry
    I am sorry to welcome you to these boards. I am glad you found it, but sorry you had to do so. The shock and awe you describe is pretty normal. I think I walked around in a fog for at least a week after my husband was diagnosed. You don't say how old your mother is or what the prognosis is. Whether or not she continues treatment needs to be her decision if she is thinking clearly. Although my husband was told that his cancer would be life shortening, he chose to buy as much time as possible. He bought much more than any of us expected, but he had to make the choices on treatment options. You may have a better feel for things after treatment starts. Just hang in there and know you are not alone. Fay

    my mom
    She is 83 in June this year.communication is very limited now that the tumor damaged her speech. so we are never 100% sure of her wishes except that right now she wants to carry on with treatment. She is declining some with motor skills especially on right side. Something has started with her right hand in the last few days. This has all been since surgery april 13.It seems harder to care for her each day because it is hard to communicate and she has some confusion at times.
  • elvyra00
    elvyra00 Member Posts: 8
    #7
    AKAngel said:

    You're not alone
    I sympathize with what your life now feels like...most of us have lived in the 'nightmare'...that's why we're here. Sharing each other's perspectives of this horrendous dream we can't wake up from is the best that we can do for non-physical support. It's good that your mom still retained most of her capabilities to do things. Definitely would advise looking into hospice, they can help out a lot, not just for your mom but your entire family. Prayers and hugs to you....

    my mom
    yes we are already hooked up with home health agency with hopice. they are so far really helpful.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #8
    elvyra00 said:

    my mom
    She is 83 in June this year.communication is very limited now that the tumor damaged her speech. so we are never 100% sure of her wishes except that right now she wants to carry on with treatment. She is declining some with motor skills especially on right side. Something has started with her right hand in the last few days. This has all been since surgery april 13.It seems harder to care for her each day because it is hard to communicate and she has some confusion at times.

    Hang in There
    These are really hard days. It sounds like your mother is declining quickly. Just try to find some joy in the time you have together. I find myself looking back at some of the rough times with my husband in a whole different way now. Just treasure the better times, tell your mom that you love her and make her as comfortable as possible. If she wants to continue treatment, support that decision. You might want to talk to her about some of your good memories from the past. Most elderly people enjoy looking back. Take care, Fay
  • elaine7royer
    elaine7royer Member Posts: 3
    #9
    right temporal lobe tumor for us
    My husband was diagnosed with a right temporal lobe tumor in Oct. of 08. Since then he has had a craniotomy while asleep. He is still in much pain from the surgery. His surgery was over 2 weeks ago. It is difficult for me to see him hurt so much. I can't imagine what it must be like for him. His tumor is called Diffuse Astrocytoma grade 2. It grows slowly. Living with this has totally changed our lives. He is very sensitive to sounds. He can't bear to hear the phone or the doorbell ring. Caregivers have to always keep in mind that no matter how tough it is on us it is worse on the one with the tumor.

    elaine7royer
  • elaine7royer
    elaine7royer Member Posts: 3
    #10
    grandmafay said:

    Hang in There
    These are really hard days. It sounds like your mother is declining quickly. Just try to find some joy in the time you have together. I find myself looking back at some of the rough times with my husband in a whole different way now. Just treasure the better times, tell your mom that you love her and make her as comfortable as possible. If she wants to continue treatment, support that decision. You might want to talk to her about some of your good memories from the past. Most elderly people enjoy looking back. Take care, Fay

    husband with tumor
    grandmafay
    I am a nana. I have 7 grandkids. My husband has a brain tumor. I tell him daily how much I love him. I know we may be limited on time now. I pray daily that our Lord will ease his pain and allow us more time together. It is somewhat comforting to know that I am not the only grandmother on this site.
    elaine7royer
  • elvyra00
    elvyra00 Member Posts: 8
    #11
    elaine7royer said:

    right temporal lobe tumor for us
    My husband was diagnosed with a right temporal lobe tumor in Oct. of 08. Since then he has had a craniotomy while asleep. He is still in much pain from the surgery. His surgery was over 2 weeks ago. It is difficult for me to see him hurt so much. I can't imagine what it must be like for him. His tumor is called Diffuse Astrocytoma grade 2. It grows slowly. Living with this has totally changed our lives. He is very sensitive to sounds. He can't bear to hear the phone or the doorbell ring. Caregivers have to always keep in mind that no matter how tough it is on us it is worse on the one with the tumor.

    elaine7royer

    so sorry about your husband
    My heart goes out to you.This journey we are all on is a difficult one to say the least.I find myself going through different stages now. I am some better with my emotions but now fear of how different my life is now and will forever be is starting to really affect me. My mom has started treatment now with radiation and oral chemo Temodar. So far so good but very anxious about the coming weeks with the fatigue and possible other effects. MY mom has no speech since before surgery so that makes everything all the more challenging for us. I just feel numb all the time.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #12
    elaine7royer said:

    husband with tumor
    grandmafay
    I am a nana. I have 7 grandkids. My husband has a brain tumor. I tell him daily how much I love him. I know we may be limited on time now. I pray daily that our Lord will ease his pain and allow us more time together. It is somewhat comforting to know that I am not the only grandmother on this site.
    elaine7royer

    Grandmas
    There are several of us grandmas here. I have four granddaughters. They are a real blessing. Yes, we hate seeing our loved ones in pain. We are supposed to fix them or at least make them feel better, but with cancer we often can't. It also makes us so aware of how fragile our lives are. I know you are now treasuring your time together more. Everything does change. I once had someone say we're not just flexible, we're elastic. We bounce back. I am still working on the bouncing part. As you probably know from the boards, I lost my husband seven months ago. I have wonderful support from family and friends and am learning to live with my new normal. These boards help. All the grandmas, mothers, daughters, and sisters here are great listeners. Here we can vent, seek support and comfort, or just share ideas. Fay
  • AnnaLeigh
    AnnaLeigh Member Posts: 187 Member
    #13
    elvyra00 said:

    so sorry about your husband
    My heart goes out to you.This journey we are all on is a difficult one to say the least.I find myself going through different stages now. I am some better with my emotions but now fear of how different my life is now and will forever be is starting to really affect me. My mom has started treatment now with radiation and oral chemo Temodar. So far so good but very anxious about the coming weeks with the fatigue and possible other effects. MY mom has no speech since before surgery so that makes everything all the more challenging for us. I just feel numb all the time.

    One Day At A Time
    I am so sorry to hear about your mom and the difficult time that you and your family are going through. The sudden shock of her illness has certainly taken a great toll on you because you love and care for her so much.

    With everything happening so fast, I can understand how it makes your head spin with anxious thoughts and fears for the future. The best way I found to cope was to absolutely take one day at a time. If I tried to think about tomorrow or tried to second guess all of my decisions, I would find myself overwhelmed and unable to make even simple decisions or get anything productive done. By breaking things down in small pieces, I was able to handle them much better. Solve one problem before thinking about the next problem and then only take tasks one at a time also.

    Cancer treatment can cause side effects that worry the people who love them and take care of them. But there are great medications to help with those side effects and once the treatment has had time to reduce the cancer, the patient often starts feeling much, much better and is able to enjoy their days with the family. The quality of our time together is what matters most.

    Hopefully your family will bond together and support each other during the days to come. We all wish you the best and hope you will keep posting to let us know how you are doing. We are here to listen and support you during the good times as well as the bad times.

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