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.

@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

Liked by marcyprof

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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?

Liked by marcyprof

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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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@rosez

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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Challenging times for you for sure, @rosez During the vast majority of my wife's disease she looked 'normal' too. It made for some very difficult, and ugly, times with others who were sure she should be able to act normal!

I spent a great deal of time trying to explain to people, especially family, that it was the disease, not her, that was in control of her. Some understood, many did not.

Caregiving is one of those things in life that totally and completely change our lives, even though it is our loved one fighting the disease.

Strength, courage, and peace

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@IndianaScott

Challenging times for you for sure, @rosez During the vast majority of my wife's disease she looked 'normal' too. It made for some very difficult, and ugly, times with others who were sure she should be able to act normal!

I spent a great deal of time trying to explain to people, especially family, that it was the disease, not her, that was in control of her. Some understood, many did not.

Caregiving is one of those things in life that totally and completely change our lives, even though it is our loved one fighting the disease.

Strength, courage, and peace

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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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@daughterfuturemd Such a great message! Could you tell us what one important thing, you learned from these books, that could maybe help others? I’m going to put them on my reading list!

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@becsbuddy

@daughterfuturemd Such a great message! Could you tell us what one important thing, you learned from these books, that could maybe help others? I’m going to put them on my reading list!

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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

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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Hi @daughterfuturemd Your post is a good one and you make some solid suggestions! However, I feel the need to add my perspective gained from my years as a spousal primary caregiver and realize I may sound a bit blunt. If so I apologize in advance.

I believe there are no rules in caregiving beyond medical directives/orders. Every patient, every disease's path, and every caregiver is unique. When someone places 'rules' out there for caregivers to follow, and a caregiver cannot meet those rules, they feel they are not being a 'good' caregiver. That leads to increased feelings of guilt, anxiety, and incompetence. These feelings are already rampant in a caregiver's life so I truly believe they do not need any 'rules' to add to their burdens. Modifiers like 'might help', 'could be tried', 'maybe', 'perhaps', 'works for some people', 'I suggest', etc. can mitigate future feelings of failure by not adhering to, or meeting, some 'rule'. Eight hours of sleep? A nice idea, but for the last four months of my wife's life she required mediations every two hours around the clock in home hospice. Any sleep was a luxury and 8 hours an impossibility. Another for instance for me was for a long time I felt terrible anxiety over the fact I wasn't going through the 'steps of grief' properly, until I realized there are no rules to grief, even though so many folks demanded that there were!

Personally, I've also never met a caregiver who didn't want to take care of themselves. When you are in the pressure cooker that is a caregiver's life, one's own needs quickly come second — or ninth. By necessity the needs of the patient are paramount and often there is no relief person, no time off, no money, no ability to do anything other than to attend to the needs of your patient. Plus caregivers cannot simply turn off their concern for their patient and her/his needs. And after the direct care duties are the bills, dishes, laundry, cleaning, grocery shopping, meal prep, and more. From my perspective telling a caregiver to 'self-care' is akin to yelling at a drowning person to 'swim'! Nice idea, might make the one who yelled it feel like they intervened, but didn't they think they'd swim if they could?

Strength, courage, and peace to all caregivers!

REPLY
@IndianaScott

Hi @daughterfuturemd Your post is a good one and you make some solid suggestions! However, I feel the need to add my perspective gained from my years as a spousal primary caregiver and realize I may sound a bit blunt. If so I apologize in advance.

I believe there are no rules in caregiving beyond medical directives/orders. Every patient, every disease's path, and every caregiver is unique. When someone places 'rules' out there for caregivers to follow, and a caregiver cannot meet those rules, they feel they are not being a 'good' caregiver. That leads to increased feelings of guilt, anxiety, and incompetence. These feelings are already rampant in a caregiver's life so I truly believe they do not need any 'rules' to add to their burdens. Modifiers like 'might help', 'could be tried', 'maybe', 'perhaps', 'works for some people', 'I suggest', etc. can mitigate future feelings of failure by not adhering to, or meeting, some 'rule'. Eight hours of sleep? A nice idea, but for the last four months of my wife's life she required mediations every two hours around the clock in home hospice. Any sleep was a luxury and 8 hours an impossibility. Another for instance for me was for a long time I felt terrible anxiety over the fact I wasn't going through the 'steps of grief' properly, until I realized there are no rules to grief, even though so many folks demanded that there were!

Personally, I've also never met a caregiver who didn't want to take care of themselves. When you are in the pressure cooker that is a caregiver's life, one's own needs quickly come second — or ninth. By necessity the needs of the patient are paramount and often there is no relief person, no time off, no money, no ability to do anything other than to attend to the needs of your patient. Plus caregivers cannot simply turn off their concern for their patient and her/his needs. And after the direct care duties are the bills, dishes, laundry, cleaning, grocery shopping, meal prep, and more. From my perspective telling a caregiver to 'self-care' is akin to yelling at a drowning person to 'swim'! Nice idea, might make the one who yelled it feel like they intervened, but didn't they think they'd swim if they could?

Strength, courage, and peace to all caregivers!

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God bless you. That helped me

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