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.

Welcome @rosez. I feel your sadness.
I've added your message to the Caregivers group (https://connect.mayoclinic.org/group/caregivers/) as well as here in the Brain Tumor group.
You might also be interested in this discussion:
– Glioblastoma Multiforme and Cognitive Loss https://connect.mayoclinic.org/discussion/glio-blastoma-multiforma/

You are not alone. I'd like to bring a few members like @IndianaScott @donnamar @nursnis and @johns66. They've been there and understand your reality right now.

How many weeks of treatment will your husband have? Was he quiet and struggling to find words before treatment started?

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@colleenyoung

Welcome @rosez. I feel your sadness.
I've added your message to the Caregivers group (https://connect.mayoclinic.org/group/caregivers/) as well as here in the Brain Tumor group.
You might also be interested in this discussion:
– Glioblastoma Multiforme and Cognitive Loss https://connect.mayoclinic.org/discussion/glio-blastoma-multiforma/

You are not alone. I'd like to bring a few members like @IndianaScott @donnamar @nursnis and @johns66. They've been there and understand your reality right now.

How many weeks of treatment will your husband have? Was he quiet and struggling to find words before treatment started?

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He has only had one week of treatments. He has 5 more weeks daily. Yes he was mixing up words before. Maybe he isn’t getting worse. Maybe I am weary. One and half hour drive five days a week and I can’t leave him alone.

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@rosez

He has only had one week of treatments. He has 5 more weeks daily. Yes he was mixing up words before. Maybe he isn’t getting worse. Maybe I am weary. One and half hour drive five days a week and I can’t leave him alone.

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Hello @rosez Nice to e-meet you here on Mayo Connect. I am sorry to read of your husband's health issues. I am indianascott and I was my wife's caregiver during her war with brain cancer.

I noted you said you are weary. Not surprising for a caregiver! It is a tough and demanding road and one which indeed makes all of us weary for sure! I imagine it is tough for you during his treatment regimen especially with that drive!

My wife's condition required I be with her constantly too. If I can offer any suggestions or tips let me know.

Wishing you the best and hoping it is sunny wherever you are!

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@rosez

He has only had one week of treatments. He has 5 more weeks daily. Yes he was mixing up words before. Maybe he isn’t getting worse. Maybe I am weary. One and half hour drive five days a week and I can’t leave him alone.

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@rosez I’m so sorry you’re in this difficult situation and having to drive a long way everyday, no wonder you are weary. Have you talked with the hospital or clinic social workers? They might have some ideas about short term rentals. It might be a lot easier on you. I worry about your having to drive so much

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@becsbuddy

@rosez I’m so sorry you’re in this difficult situation and having to drive a long way everyday, no wonder you are weary. Have you talked with the hospital or clinic social workers? They might have some ideas about short term rentals. It might be a lot easier on you. I worry about your having to drive so much

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We do qualify for free, local housing but my husband wants to go home. We have some people driving a day or two for us but they are snowbirds and will be gone by the end of this month. At that point I told my husband we will have to stay near hospital.

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@rosez

We do qualify for free, local housing but my husband wants to go home. We have some people driving a day or two for us but they are snowbirds and will be gone by the end of this month. At that point I told my husband we will have to stay near hospital.

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@rosez I’m glad to hear that you do have some support right now and a plan for later. If your husband doesn’t want to stay near the hospital, just explain that it’s important for you to take care of yourself, also. If you were to get sick, he’d have no one to help him. It is imperative that you also care for yourself. Be good to your husband and yourself

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Thank you. I told him but am not sure he understands but it is what I need to do

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@rosez

Thank you. I told him but am not sure he understands but it is what I need to do

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@rosez Just wondering how your husbands treatment is going and all the driving. I hope you have some time for yourself. Know that we care about you

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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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@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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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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@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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@rosez oh, I am so sorry to hear this. Have you considered Meals on Wheels? They can deliver, for a very small fee, so that you have dinner when you get home. Have you. Been able to speak with the doctor again?

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@becsbuddy

@rosez oh, I am so sorry to hear this. Have you considered Meals on Wheels? They can deliver, for a very small fee, so that you have dinner when you get home. Have you. Been able to speak with the doctor again?

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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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@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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