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Frustrated, exhausted, overwhelmed and unappreciated

WisconsinMom
Posts: 2
Joined: Dec 2013

My husband was diagnosed with CLL seven years ago. For those who are unfamiliar, chronic lymphocytic leukemia has a long trajectory that heads inexorably towards death. My husband is in the middle of the survival range right now. He probably won't make it to ten years.

Even before he was diagnosed, we made the choice for me to work and for him to be the stay-at-home parent. He is an excellent father, a wonderful, intelligent person who can build things, fix things. He's a great cook. He's smart. He reads a ton. He's well-informed about the world. We continue to have a great sex life.

CLL has its ups and downs, and he's gone through two rounds of chemo since this started. The most recent round of Ofatumumab helped knock back the CLL but also left him with horrible chemo brain. He can't remember or cope with numbers/appointments/bills/arrangements/organization/planning.

He's also very, very tired and spends most of his time sitting and reading quietly.

I am writing because I am so tired, frustrated, exhausted, overwhelemed and feeling unappreciated. For years, he has slowly stopped doing many of the stay-at-home parent chores. He almost never does the dishes. He almost never takes out the trash. Making appointments for the kids, signing permission slips, buying clothes, making arrangements for travel, etc. are all on me. Changing the bed sheets. Organizing the kids.

Slowly, the teeter totter has tilted so that more and more of his tasks fall on me.

For the most part, I try to be cheerful about this. I am lucky to be healthy enough to work two jobs to support us. I am blessed to have the energy to get up early and run a load of laundry and get the dishes done. I am lucky that I am strong enough to get by on just five hours of sleep.

But.

It is frustrating that he doesn't realize how much I do. I don't want to throw it in his face -- "Look how awesome I am, I kill myself and work two jobs and do your work, too, so that you can rest and take care of yourself." But every once in a while, it would be nice if I got a little acknowledgment. Instead, he seems OBLIVIOUS to how much I do.

He is oblivious to how much cancer has robbed me of my own life. Yes, he is terminally ill, I get that. That is a far worse fate. But every day of my life -- every minute -- is expended in some way to make his better and easier.

How long will this go on?

How much worse will it get?

How will I keep doing this?
Will he ever realize what I am doing for him?

Sometimes, the only thing that gets me through the day is to say to myself, "Some day, it will be time for me. Some day, I will sell this house. I will travel. I will have a life again."

Perhaps his obliviousness is a coping mechanism. Who would want to admit that they are less able than they were?

But still. I am a human being. I am not the hired help. I am not the secretary. I am not just an ATM. I am a real person with real needs. One of which is to be acknowleged.

One of my friends once said, "It's like you're walking across the street with him and you know he's going to be hit and killed by a car, but you don't know when, you can't see the car coming and the street just stretches ahead into the horizon."

It super duper horrible sucks that he's going to get hit by that car. But it also sucks for me that he doesn't have any idea what it's like to be the one holding his hand while we wait for it.

 

 

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

I have some understanding of how you are feeling. My husband fought colon cancer for 6 years before he lost his battle. We were in a much better position since we were both retired and our children were grown. Even so, there were days when I was totally worn out. I can't even imagine what it is like when you have all those additional responsibilities. I'm sure your husband is sick and tired of being sick and tired, too. I'm guessing that he is dealing with depression as well. Maybe his doctor could suggest something to help with that. How do you think he might respond to you simply asking him what he thinks he can do. since he is having memory issues, maybe he needs a list of chores to do, gentle reminders. it sounds like he is a good guy. Share with him what you have written here. Tell him you are feeling overwhelmed. I know that's hard to do. You might even feel guilty bringing it up. I know I felt some guilt when I talked to my husband about things that I needed his help with. he assured me that i shouldn't feel guilty, and appreciated that I wasn't treating him with kid gloves. Being a caregiver was the hardest thing I ever did. Sometimes you just have to make me-time even if it is just something little like having coffee with a friend or taking a walk. Come here anytime you need to vent, too. You are not alone. Many share similar feelings. Take care of yourself, too. Fay

WisconsinMom
Posts: 2
Joined: Dec 2013

Grandmafay,

Thank you for your supportive comments. I do feel guilty bringing it up. I feel as if I am saying, "I know you are dying and all, but I'm really sick of being in charge of scheduling everything." My complaints sound petty to my ears.

I tell myself a marriage shouldn't be a contest of who has it worse, but in this case, he's always going to have it worse -- until he dies, then he'll be at peace and I'll have it worse dealing with the kids all by myself.

Being a caregiver really is the hardest thing ever and he's not even at the point yet where he needs physical, day-to-day care. It's mostly just the big holes in his mental abilities that are taxing me right now.

Did your husband get treated for depression? I am trying to imagine how to bring that up.

He is a good guy. He's a great guy. He really is.

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

No, my husband didn't get treated for depression. He had a very strong faith that sustained him most of the time. we had to switch family doctors a couple of years into Doug's treatment. She was actually the first doctor to ask him how he was dealing emotionally. She later told me that he was the most adjusted terminal patient she had ever worked with, and that often times the patients need help in that area. I think the other doctors were so focused on the cancer, they didnt think a lot about the person. I know others here have found meds and/or counseling helpful for both the patient and/or the caregiver. this is a very stressful time for all. You might ask one of your doctors to ask your husband about his emotional state. Doug really appreciated being asked. 

I understand the guilt. We really shouldn't feel it, but we do. i think it is important to remind ourselves that we are facing one of our greatest fears, the loss of our spouse. This isn't what we planned. I kept thinking, "We were supposed to grow old together." We weren't supposed to be facing the "until death to us part" stuff for many years. As a caregiver, you are doing the best you can right now. You have already started the grieving process, grieving the life you expected, and anger, frustration, etc. are all a part of that. Hang on. take care of yourself, too. Seek out help from others if you can. Fay

Ladylacy
Posts: 468
Joined: Apr 2012

I can relate to a degree.  While my husband and I are both retired, and are children are grown, there are times when I get really frustrated and start fighting with him and then I feel bad.  When he was diagnosed almost 4 years ago with laryngeal cancer, he underwent radiation, chemo and then surgery.  I handled everything and still do.  Then one year after surgery, we found out he had a second primary and they ruled out surgery.  He once again underwent radiation and chemo.  He had 4 months of being NED when we found out that the 2nd primary cancer was back, much larger, and that he had cancer in one of his lungs.  He refused further treatment.  Only thing offerred was chemo and much stronger.

From that time forward I have watched him just sit and feel sorry for himself.  It has been almost a year, next month, that we found out he is terminal.  During this time, thankfully, his condition hasn't changed all that much.  But he is depressed but refuses any treatment for it.  He used to be very active and enjoyed working in the yard, neither of which he does now.  I find myself getting very frustrated and will start arguing with him and yes I feel bad afterwards.  I have told him he has just given up.  Then he gets mad at me.  But then again it seems to work to getting him interested in doing some things.  I know he can't do much as he tires very easily and gets short of breathe.  He is on hospice because the doctor said they could be his ears and eyes.  My husband agreed to hospice as I wasn't and still am not sure it is needed right now. 

I do everything and yes it gets very tiring and frustrating.   But the main thing is you have to take care of yourself and if you feel the need to get mad at your husband, then show it and don't feel guilty.  Sometimes that is something they need.  It is very hard to be a caregiver, work, take care of children, the house, etc. but in all of this you must take care of yourself and if that means loosing your temper so be it. 

 

 

jjcaregiver
Posts: 2
Joined: Jan 2014

I can so relate to what you are saying, it brings tears to my eyes. While I can't imagine having to manage two jobs and kids on top of all of this, I did have to leave my home, my city, my job, to move back in with my mom and the day to day is so frustrating. She constantly says she doesn't want to be a burden, yet does not even the simpliest things to help. I'm trying not to completely put my life on hold for her, but it sure feels like it sometimes.

 

I'm learning to let go of some of the things that need doing in favor of giving myself time to go on a walk, read a book, listen to music - anything but drown in my to-do list and frustration as I watch her sit by not helping. The feelings of guilt are always there, just behind the frustration, which makes it doubly worse.  I hope you can find an outlet that is just for you, it sounds like you more than deserve it!

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