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

Posted by rosez @rosez, May 9, 2020

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.

@hopeful33250

Hello @rosez,

I've just been reading your conversations about your husband's illness and some of the difficulties you've experienced along the way. I can understand your sadness and feelings of being scared. When you say, "the thought that they said treatments might not work scares me" is very understandable given your circumstances right now. I'm so glad that you joined Mayo Connect and I hope you are finding support along the way both in your community of family and friends as well as here on Connect

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Because of the virus, my family and friends cannot help me. My children all live out of state so they cannot come here. Most of my neighbors are snow birds and have already left or leaving soon.

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@rosez

Because of the virus, my family and friends cannot help me. My children all live out of state so they cannot come here. Most of my neighbors are snow birds and have already left or leaving soon.

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Hi again, @rosez You talk about so many important feelings in your posts caused by caregiving! I, too, had no help with my wife so I understand your feelings of isolation and wondering how to carry on all the multitude of required tasks. I'm hoping you have at least a couple neighbors who aren't snowbirds. I find even waving across the yard these days is good for my mental health — and a smile can go a long way to boost my spirits.

I found it interesting how you said your husband's doc parrots 'you're doing good'. My wife and I heard this at every one of her appointments with her primary care doc that it made both of us uneasy. We'd explain a change, something new happening, etc. and yet we were always 'doing fine'. I don't remember exactly when but one appointment when my wife was explaining a new tremor she was having, the doc saying 'well, you're still doing fine' and my wife looking at me and saying out loud 'Scott, do you think she's as full of bull (deleted) as I do?' It caught me so by surprise I burst out laughing! Not the most gentile way to get the doctor to actually listen, but it did the trick!

If I may ask, how much longer is your husband's course of chemo and radiation set for?

Sending Strength, Courage, and Peace

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@IndianaScott

Hi again, @rosez You talk about so many important feelings in your posts caused by caregiving! I, too, had no help with my wife so I understand your feelings of isolation and wondering how to carry on all the multitude of required tasks. I'm hoping you have at least a couple neighbors who aren't snowbirds. I find even waving across the yard these days is good for my mental health — and a smile can go a long way to boost my spirits.

I found it interesting how you said your husband's doc parrots 'you're doing good'. My wife and I heard this at every one of her appointments with her primary care doc that it made both of us uneasy. We'd explain a change, something new happening, etc. and yet we were always 'doing fine'. I don't remember exactly when but one appointment when my wife was explaining a new tremor she was having, the doc saying 'well, you're still doing fine' and my wife looking at me and saying out loud 'Scott, do you think she's as full of bull (deleted) as I do?' It caught me so by surprise I burst out laughing! Not the most gentile way to get the doctor to actually listen, but it did the trick!

If I may ask, how much longer is your husband's course of chemo and radiation set for?

Sending Strength, Courage, and Peace

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He has three more weeks of chemo and radiation and then we wait a month for MRI to see if it worked

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@rosez

We see the doctor every week. He says you are doing good, I'll see you next week. Actually he might start getting worse next week they said because radiation might cause swelling in his brain and make him worse.
I am home early enough to cook and neighbors have been sending us meals.

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@rosez I’m so glad to hear that the neighbors are helping with meals. It sure can make a difference! About your husband and radiation to the brain. The effects of radiation therapy are cumulative so the fatigue will get harder to deal with. That’s the time you may want to stay near the hospital. If he is extremely tired, you’ll find that you have to do more for him and that will be hard for you. I’d hate for you to get totally worn out. Cyber hug to you!

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@becsbuddy

@rosez I’m so glad to hear that the neighbors are helping with meals. It sure can make a difference! About your husband and radiation to the brain. The effects of radiation therapy are cumulative so the fatigue will get harder to deal with. That’s the time you may want to stay near the hospital. If he is extremely tired, you’ll find that you have to do more for him and that will be hard for you. I’d hate for you to get totally worn out. Cyber hug to you!

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Thank you

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Hello Rosez @rosez, I'm sorry to hear about your husband's condition (I just read your first post). I don't know how changed your husband's attitude, but I thought that my personal experience could perhaps help you.
I myself have a WHO4 glioblastoma located in the 3rd ventricle (limbic system). When my tumor is bleeding, it presses on the thalamus and hypothalamus, which changes my character. I no longer feel emotions, I become more passive, I speak less, I lose the desire to do things. It does not make me sad but it is difficult for those around me to see me like this. I thought to myself that perhaps your husband does not live his situation as you perceive it. It is very mysterious how the brain reacts. It depends on the location of the tumor. For my part, since the hemorrhage has subsided and I have become myself again, I no longer see this behavior (that some older people, looking into the void …) in the same way. I remember that I was not unhappy contrary to appearances. I was living in the moment and I felt pretty good (because I no longer felt stress). I remember I felt that I was not alone, that my husband was there for me and that I could trust him. Also, during chemotherapy, I put myself in "conservation" mode, in a small ball to preserve what I had left of energy. What worries me today is the distress of those I love. I now try to communicate my impressions to my family so that they know that, for my part, I was not unhappy and they did well.
Courage. There is always hope and the most comforting in illness is the love and tenderness received from those we love.

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Thank you for sharing your story

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Today starts week 5. I feel he is doing good but I am sinking. I am no good at this and he is constantly angry at me. I find it very difficult to understand him sometimes and my sisters make me feel like I am not patient enough. I want to cut myself off from everyone.

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@rosez So sorry to hear of your experience. I am not familiar with his condition nor do I know if your loved one was constantly mad at you prior to his condition, but know that when people are in pain and not well they usually are not themselves. As hard as it is to watch and see them like this, it's hard for us caregivers to remember who they were before they were ill. I encourage you to continue to do what's right and love your loved one to the best of your ability. I also encourage you to ask for help.

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@rosez

Today starts week 5. I feel he is doing good but I am sinking. I am no good at this and he is constantly angry at me. I find it very difficult to understand him sometimes and my sisters make me feel like I am not patient enough. I want to cut myself off from everyone.

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@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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@rosez

Today starts week 5. I feel he is doing good but I am sinking. I am no good at this and he is constantly angry at me. I find it very difficult to understand him sometimes and my sisters make me feel like I am not patient enough. I want to cut myself off from everyone.

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Hello @rosez,

I am so sorry to hear about your frustration. Being a caregiver to a critically ill loved one is the hardest task that we can face. I am also sorry to hear that you are receiving criticism from your husband as well as other family members.

It is important for you to get some help. Will you call one of the senior agencies in your area and hire someone to help you. When my mom was at her very worst, I had an agency send a person by to drive us both to appointments and help me with my mom's walker, etc. getting it in and out of the car as well as assisting her in and out of the car and to appointments. it cost a bit of money and she was reluctant for someone outside the family to get involved. I did explain to her that I was older and had health problems and we must have help. She conceded and accepted the help and paid for it. It was so good for me. Right now, you must consider your needs, not just the needs of your husband. If you become injured, hurt, or disabled during this process you will not be able to help him at all.

Will you call and get some help?

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My husband is not critically ill. We will not know if radiation worked until mid July. My problem is that I cannot leave him alone as he might confused. If you saw him, you would think he is absolutely fine until you spoke to him for awhile and not understand words he is saying. We both get frustrated and angry because of it and my sisters think I am too hard on him. I wish I could be the person they think I should be but I am not. I cannot go anywhere without him which is very difficult for me.

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