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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.

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kowalski | @kowalski | Jun 14, 2020
In reply to @rosez "I am miserable. I do have help driving and next week we might stay at a..." + (show)
@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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rosez | @rosez | Jun 14, 2020

Moffit in Tampa Florida. Tomorrow is his last treatment.

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rosez | @rosez | Jun 15, 2020
In reply to @daughterfuturemd "@rosez I cannot begin to fathom what you are going through nor will I try to,..." + (show)
@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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rosez | @rosez | Jun 25, 2020

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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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 25, 2020
In reply to @rosez "I am leaving this post. My husband is not getting better and I am so sad...." + (show)
@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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1 reply
rosez | @rosez | Jun 25, 2020
In reply to @becsbuddy "@rosez that’s so sad! You have done so much for your husband! Can your husband not..." + (show)
@becsbuddy

@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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My husband does not nap. He can't be left alone for more than an hour. I can't talk to therapist when he is home because I know that i would cry and he would feel terrible

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1 reply
rosez | @rosez | Jun 25, 2020

My husband does not nap. He can't be left alone in case he has a seizure. He was supposed to go to golf tomorrow but decided he is not up to it.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 26, 2020
In reply to @rosez "My husband does not nap. He can't be left alone for more than an hour. I..." + (show)
@rosez

My husband does not nap. He can't be left alone for more than an hour. I can't talk to therapist when he is home because I know that i would cry and he would feel terrible

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@rosez this must be hard to not be able to talk to your therapist today as planned. Might it be possible for you to talk to your therapist through texting rather than by phone or video?

I know that we are not the same as a therapist, but keep in mind that you can always type with us here on Mayo Clinic Connect.

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1 reply
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jun 26, 2020
In reply to @rosez "I am leaving this post. My husband is not getting better and I am so sad...." + (show)
@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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Hi @rosez I am so sorry to read of your husband's continuing health difficulties. I remember it was beyond difficult when I desperately wanted my wife to get better, but her disease had alternate plans. It was very hard for me to accept the fact I had no control over any aspect of her disease, nor did she. I think as caregivers we want to make things as best we can, but often cannot. That was one of my supreme challenges -- having to come to grips with my inability in that area and to instead be forced to change my life as a result.

Mayo Connect was a sanity saver for me so I hope you stay here as your time allows!

Strength, courage, and peace!

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rosez | @rosez | Jun 26, 2020
In reply to @colleenyoung "@rosez this must be hard to not be able to talk to your therapist today as..." + (show)
@colleenyoung

@rosez this must be hard to not be able to talk to your therapist today as planned. Might it be possible for you to talk to your therapist through texting rather than by phone or video?

I know that we are not the same as a therapist, but keep in mind that you can always type with us here on Mayo Clinic Connect.

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Your sight is for medical questions., not for ranting so I do not see a reason for staying.

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