So sad: Husband has glioma and I feel he is fading away

Posted by rosez @rosez, May 9 10:18am

My husband has a grade 2 glioma and I feel as if he is fading away. He mixes up words and is very quiet. He just finished his first week of chemo and radiation.

@daughterfuturemd

Absolutely! Great point, @becsbuddy. I think there are a couple of important messages that I have come across throughout my readings & am happy to share them on here. These messages/lessons have come to me through these books & readings but I think they are helpful for EVERYONE on this planet (not just caretakers):

(1) SELF CARE – this is *SO* important yet so hard to do at times especially when we feel tied down by so many restraints as a caregiver. However, it is very important for us to get time to ourselves to decompress, relax & clear our minds. This might means different things for different people. For instance, it could be 10+ minutes of mindfulness per day depending on what your schedule allows. It could even be those 10 minutes when your loved one is napping/sleeping so you aren't worried about constantly seeing how they are doing. Also, mindfulness could mean anything anywhere – its basically where you put everything else on *HOLD*, press the *PAUSE* button and just focus on that one thing for 10 minutes without letting any other thoughts/activities get in the way. For instance, for some it means 10 minutes of prayer or meditation per day, 10 minutes of reading your favorite book, or watching your favorite TV show for 20-30 minutes, etc. By giving yourself this time every day, you live a little for yourself as you take care of your loved one through their hardships.

(2) Rule of Eights (8 + 8 + 8):
*8 hours of work* – work can be anything that you define as "work" or "tasks". For instance, caretaking/giving fall under this category as well. For me, driving my loved one to his/her radiation appts takes up about 4 hours of this "8 hour block" and then I use the other 4 hours to coordinate their other appts, get some studying done, and check my emails/this discussion board.
*8 hours for you* – Now, after 8 hours of work, you are done working for the day. A new 8 hour round starts now, and this one is all for you. Each one of us has some hobby. Enable it in this period of the day. Whether is blogging, reading a book, playing guitar, watching a movie, meeting your friends, going to the gym, etc.
*8 hours of sleep* – Humans need (on average) around 8 hours of sleep in a single day. It is that period of the day where you need to regain your energy for the upcoming one. So try to give yourself these 8 hours of bliss. 🙂

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@daughterfuturemd Thank you ! Very helpful

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Hi I’m not sure how to do a new post on this site
But I was wondering if anyone had had PCV chemo?
Also you and your husband will be in my prayers!

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@user_chea8a92a

Hi I’m not sure how to do a new post on this site
But I was wondering if anyone had had PCV chemo?
Also you and your husband will be in my prayers!

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Hello, @user_chea8a92a I’ve not had PCV chemo but, let me check, there may be an ongoing discussion about it. And, we’ll see if we can move your question to a better suited site where it will get more notice

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@user_chea8a92a

Hi I’m not sure how to do a new post on this site
But I was wondering if anyone had had PCV chemo?
Also you and your husband will be in my prayers!

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@user_chea8a92a, you can find instructions on how to Start a New Discussion here: https://connect.mayoclinic.org/get-started-on-connect/

I encourage you to start a new discussion about the chemotherapy regimin procarbazine, lomustine and vincristine (PCV) in the brain tumor group https://connect.mayoclinic.org/group/brain-tumor-support-group/

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@rosez

God bless you. That helped me

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Good morning @rosez How is everything right now? Even though the world is in such turmoil right now, I hope that everything is OK with you. Do you get Sundays off from driving?

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I don't have to drive on Sundays and this week we are staying at a hotel.
I am not doing so well but I am planning to go to counseling when we are home.
I am anxious, depressed, angry and disappointed with myself.

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Oh @rosez, don't be so severe with yourself. What you are going through is difficult and no one is perfect, besides, there is no right way to get through. Be good to yourself, you need it to last. We all know here how difficult it is to accompany a seriously ill person. I send you a big warm hug because what you support is really hard: courage, one day, this difficult moment will be behind you. XX

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@marcyprof

Oh @rosez, don't be so severe with yourself. What you are going through is difficult and no one is perfect, besides, there is no right way to get through. Be good to yourself, you need it to last. We all know here how difficult it is to accompany a seriously ill person. I send you a big warm hug because what you support is really hard: courage, one day, this difficult moment will be behind you. XX

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Thank you

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@daughterfuturemd

@rosez I cannot begin to fathom what you are going through nor will I try to, but I too am a caretaker/caregiver for someone diagnosed with GBM and I think we can all agree that it is NOT an easy job and almost always an uphill battle. Caretaking and caregiving, in my opinion, are sometimes just as hard as the battles our loved ones fight because its an unseen and unheard battle. We cannot experience the pain/suffering they are going through but yet we see and feel its repercussions. And at times, it feels as though there's no one there to care for us or ask us how WE are doing. As a medical student and a future physician, I am constantly reminded about the power and importance of self-care because without self-care we cannot care for others. I am not sure if you are a reader, but I personally find strength & hope from books, social media and forums like these. Here are a list of some books that have helped me & hope will help you too:
1. The Caregiver’s Challenge: Living, Loving, Letting Go By Maryann Schacht, Psychotherapist
2. The Fearless Caregiver: How to get the best care for your loved one and still have a life of your own
By Greg Barg
3. The Conscious Caregiver: A mindful approach to caring for your loved one without losing yourself
By Linda Abbit

Please let us know if there are other ways we can support you & each other through these grueling times, and like someone once said to me, "this too shall pass."

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Thank you for recommending the Care Giver. After a few chapters, I already feel better. God bless

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@marcyprof

Oh @rosez, don't be so severe with yourself. What you are going through is difficult and no one is perfect, besides, there is no right way to get through. Be good to yourself, you need it to last. We all know here how difficult it is to accompany a seriously ill person. I send you a big warm hug because what you support is really hard: courage, one day, this difficult moment will be behind you. XX

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Thank you

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@rosez

I am miserable. I do have help driving and next week we might stay at a hotel. I am finding this so very hard. I am sure the virus makes it worse since no one can visit us. I think his confusion is worse and the thought that they said treatments might not work scares me.

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What hospita?

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Moffit in Tampa Florida. Tomorrow is his last treatment.

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@daughterfuturemd

@rosez I cannot begin to fathom what you are going through nor will I try to, but I too am a caretaker/caregiver for someone diagnosed with GBM and I think we can all agree that it is NOT an easy job and almost always an uphill battle. Caretaking and caregiving, in my opinion, are sometimes just as hard as the battles our loved ones fight because its an unseen and unheard battle. We cannot experience the pain/suffering they are going through but yet we see and feel its repercussions. And at times, it feels as though there's no one there to care for us or ask us how WE are doing. As a medical student and a future physician, I am constantly reminded about the power and importance of self-care because without self-care we cannot care for others. I am not sure if you are a reader, but I personally find strength & hope from books, social media and forums like these. Here are a list of some books that have helped me & hope will help you too:
1. The Caregiver’s Challenge: Living, Loving, Letting Go By Maryann Schacht, Psychotherapist
2. The Fearless Caregiver: How to get the best care for your loved one and still have a life of your own
By Greg Barg
3. The Conscious Caregiver: A mindful approach to caring for your loved one without losing yourself
By Linda Abbit

Please let us know if there are other ways we can support you & each other through these grueling times, and like someone once said to me, "this too shall pass."

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Thank you for recommending the Conscious Caregiver. I immediately felt better knowing that my feelings are normal.
The only problem I have is that I cannot hire someone to sit with him as he seems perfectly fine. The problem is that the doctor said that he could have a seizure at anytime and so cannot be left alone. All of our snowbirds have returned home which leaves me with only my sister and I can't keep asking her to stay with him. He finished his last radiation treatment today so I won't have to drive to the hospital anymore. Last week, we stayed at a hotel near the hospital which was sooooo good for both of us.

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I am leaving this post. My husband is not getting better and I am so sad. I have an appointment with a therapist tomorrow but don’t believe I will be able to keep it and my husband canceled his plans for tomorrow so I will have no privacy for a virtual meeting.

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@rosez

I am leaving this post. My husband is not getting better and I am so sad. I have an appointment with a therapist tomorrow but don’t believe I will be able to keep it and my husband canceled his plans for tomorrow so I will have no privacy for a virtual meeting.

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@rosez that’s so sad! You have done so much for your husband! Can your husband not be left alone? Maybe when he naps, you could have a phone talk with the therapist. Can you try that? And, please don’t leave! We’re here for you.
Maybe you could join one of the groups that @colleenyoung mentioned at the beginning of this discussion. Will you take a look at them?

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