Dealing with Guilt

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Permalink Reply by GADawg/MOD on July 5, 2011 at 11:23am

Hi Silja,

Are you sure you aren't reading my mind? We are in VERY similar situations. My mom has had stage IV for 5 1/2 years, but the last 2 years has been in a wheelchair due to side effects from radiation to the brain. She's also blind on her right side. I was 29 when my mom was diagnosed. I live about 9 hours away.

I have found it very difficult these last 5 years to live my own life to the fullest. My husband and I have turned down lucrative job offers and put off moving just because I felt so guilty about being any further away from my mom. I travel almost every month, flight and rental car, to see her- most of our money is spent on this.  Even when I do something for myself, such as going on vacation, it's difficult to fully engage and enjoy it because I think "my mom would love it here" and I feel guilty for doing all the things she can no longer do but would have loved.

I, too, have found it very difficult to find others to talk to- not many people my age are going through something similar. As I'm still struggling with all this, I won't try to give you any sage advice. But, since I'm a bit older (not necessarily wiser!) and have been going through this a bit longer, I will tell you that putting my own needs behind my mom's, whether emotionally or practically (such as turning down job offers), has not been productive and has not worked out well. My husband and I really regret turning down a lot of these opportunities, and I have had a lot of anxiety about not getting on with my life. I know it's so hard, because I feel so guilty and I feel like my mom is a ticking time bomb, and I have the rest of my life to move to exotic locations, go on vacation, etc. Right now my mom should be my focus. And there is some truth to that. But, when you're dealing in a time frame of having dealt with this for years like you and I have, it becomes unhealthy to put your own needs last. No one knows how long our mothers will live, could be months or could be many more years. That's what stops me from living my life fully-- the not knowing.

But, I feel like I've wasted these last 5 years by putting everything on hold. I started seeing a grief/illness therapist, and that's helped a lot. I'm really trying to have more balance in my life- doing the right thing for my mom while getting on with my life and not burdening myself with guilt. It's a daily struggle for me. My only advice is to be mindful of this- I don't have the magic answer as to how to balance all this, but just be mindful of putting your own life on hold, carrying around guilt, etc. Life doesn't really work that way-- time passes on, job offers come, you get older, etc. Life doesn't just freeze while your mom has cancer. I've learned that the hard way. Another source of support I've found is this website. I know I've rambled and written WAY too much, but I feel we're in such similar situations that I just had to respond. I hope some of what I've written has made sense and helped you just a bit. Hang in there!

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Permalink Reply by AmyLCA on July 11, 2011 at 5:12pm

Hi Silja,

 

I'm sorry to be responding late to this. I was out of town and not able to access the website so I am trying to catch up. 

 

I was my mom's caregiver for a long time, but I think GADawg's experience more mirrors your's than mine did. 

 

I was 22 when my mom was diagnosed with her first cancer. As hard as it is, balance is key here. And keep in mind throughout that any parent's biggest wish is for their child to be happy and follow their dreams (or at least it should be!). I know my mom wanted that, and I'm grateful that she (and a good therapist) pushed me to work overseas for six months and pursue my graduate degree, both during a time of great uncertainty about her health. 

 

How is your mom cognitively speaking? The stroke left her unable to physically care for herself, but is she able to socially interact with you or others? That can be a challenge with stroke, regardless of where it came from. 

 

My husband's father had a stoke 5 or 6 years ago that left him cognitively and physically impaired. He can get around, but relies heavily on others for transportation and some day to day activities. It's also hard to have more than a very superficial conversation with him. His wife is the type of caregiver who defines herself by her role as a caregiver. And it has exhausted her. She also has health problems, but doesn't seem able to ask for help. It's hard to watch. 

 

Getting to the care facility frequently to visit is great, but maybe quality matters more than quantity. If she's cognitively able to communicate what her wishes are, maybe you can talk to the nurses about what is realistic to be able to actually do. Maybe it means not visiting her three times a week but finding a way to take her out to dinner (or bring a nice dinner in, and bring friends to share it) once a week. Does she have other friends who can visit during the week too? Or every two weeks? 

I guess part of my point is, don't hesitate to ask for help. You shouldn't be carrying the role of caregiver all on your own. It should not be only your responsibility to bring her joy. Is there a social worker that the care facility can connect you with that might be able to help you think through things you can do? It might help to have someone to bounce ideas off of who knows the stroke population and knows what can and can't be accomplished. 

 

I'm a little jet-lagged, so this might not make much sense. Hopefully there are bits that will be helpful. 

 

Keep us posted on how things are going. 

 

Amy

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Permalink Reply by snt1986 on July 22, 2011 at 10:36am

Hi Amy,

 

I apologize now for my lateness in responding! I went to New York for a 9 day vacation and decided to completely cut myself off from as much of life at home as possible and really didn't check in to my e-mail or this site. I am happy to say I was able to enjoy my vacation and not feel bad about it! I spoke with my mom a few times during the trip and she liked me sending her pictures and such.

 

My mom can speak and knows who everyone around her is and everything. She seems pretty "with it" most of the time, but her short term memory has been very affected. She almost always seems distracted and you find yourself looking behind you to see if someone is walking up because she often doesn't finish sentences and gazes off. I think the hardest part of interacting socially with her is that she seems to have lost interest (or memory) in what is going on in everyone else's lives. I try to tell her about work or boys or whatever else is going on in my life and she is rather disinterested- making carrying on a conversation difficult.

 

Luckily, I am not taking the burden of visiting her often by myself. I do have 2 sisters and my Mom has a lot of friends who try to visit when they can. It has slowed down over time, but I can count on them them particularly if I know there is a long weekend that my sisters and I are unavailable. Some of her friends have laid guilt trips on me though- calling me to tell me that they don't think my Mom's quality of life is great, but not offering any feasible suggestions to what we can do to change it.

 

There is a social worker where she is living, but I have a hard time getting over there during her hours to speak with her as I work 9-5 during the week. Luckily my company has given us Fridays off until labor day so this should help things with me being able to communicate with the staff there.

 

You were very close in age to me when your Mom was diagnosed- I was just turning 23. How is your Mom doing now?

 

Thank you for our message- I really appreciate all the advice!

Silja

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Permalink Reply by AmyLCA on July 22, 2011 at 3:02pm

Hi Silja,

 

I'm glad you were able to enjoy your vacation. Sometimes it's hard to separate completely even in the best of circumstances!

 

It's such a tough situation that you are in - because it's not so much the cancer that seems to be causing the problems. You mentioned that her cancer has been stable or inactive for a few years. Even if she's cancer-free for the rest of her life, the effects of the stroke will always be there to some degree. Sometimes the effects can improve if she is working hard with a physical or occupational therapist, but it's a lot of work. My father-in-law had his stroke probably about 6 years ago, and his mobility has improved over the years when he has been diligent about doing the exercises that he is supposed to be doing. His mental status improved at the beginning (he couldn't talk or understand much at first, but now he can), but sort of leveled off. 

 

But ultimately, it may be a while, if it happens at all. So it sounds like it might benefit you to talk to someone who can help you figure out a long-term plan to find balance in your life. I worked with a therapist for many years who was very helpful in helping me figure that stuff out. Talking to the social worker in her facility may help you identify someone who might be able to help you out. 

 

My guess is that it's not disinterest that she is expressing, but she may not be able to focus on conversation for very long. That's another way in which a social worker might be helpful - in giving you tips on how to communicate with her. I'm sure there are certain tricks to communicating with a person who has sustained brain damage from stroke. But that's gotta be hard. I can't imagine trying to talk to my mom about things like guys and work and school and friends and not have her able to really understand or give feedback. 

 

You asked how my mom is doing. Unfortunately she passed away in 2003. But it wasn't from lung cancer. She died from inflammatory breast cancer, a rare and aggressive type of breast cancer. She had been living with stage 4 lung cancer (in her bones) for a year or two before she developed breast cancer totally independently of the lung cancer. Her immune system was probably too compromised to be able to recover. I was 29 when she died. 

 

And try not to let her friends guilt trip you. Okay, maybe her QOL isn't great, but there's not a whole lot you can do about that, as much as you'd like to. 

 

Hang in there. 

 

Amy

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Permalink Reply by Barb267 on July 11, 2011 at 11:14pm

I just realized that my son was only 20 when I was diagnosed.  From a mothers prospective here, I wanted him out living his life to the fullest not worrying if I was having fun.  That is all a mothers want is their children'  happiness.  You go visit and that is wonderful and know that she loves the time you do spend with her.  But she would be heart broken to know that you were feeling so guilty that you were crying.  

 

Blessings

Barb 

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Permalink Reply by snt1986 on July 22, 2011 at 10:42am

Thank you, Barb! (And I apologize for my late response! I took a vacation to NY for 9 days and decided to try to take my mind away from things as much as possible). I know you are right, and I know my Mom wants me to be happy first and foremost. Right before the stroke, I was supposed to move back to Korea. At the time her cancer was inactive and although we knew it would very likely become active again, she pushed me to go and do what I wanted to do. At this point, she often makes comments making me feel guilty about not being around (everytime I leave visiting her she says I didn't stay long enough, or she calls me at work asking me to leave work to come do an activity) but I know that her brain has been severely traumatized and I have to remind myself that deep down she knows I am doing what I can and wants me to live my life. 

Best,

Silja

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Permalink Reply by GADawg/MOD on July 12, 2011 at 9:57pm

Wow, Barb thank you so much for giving a mother's perspective. I have a lot of guilt about moving away, furthering my own life goals, etc. because I want to be there for my mom. Thanks for giving me some reassurance from a parent's perspective.

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Permalink Reply by tammy on July 13, 2011 at 9:59am

From another mothers perspective,I agree 100% with Barb...my lung cancer moved to my brain and I was not allowed to drive for 6 mos.My 18 yr old daughter drove me almost everywhere I needed to go,while my husband and other family and friends had to work,she also took on cleaning,grocery shopping and cooking occasionally.That was the hardest part of this whole thing,I felt terrible about it...even though she insisted that she didn't mind.Before I got sick I took care of everyone,now I had to be the 1 being taken care of...it was very hard.So,live your life,be happy,don't let your Moms cancer stop you from doing these things...I'm sure that would be the last thing she would want...visit her and let her know that you love her and she'll be happy;~}

 

Tammy

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Permalink Reply by GADawg/MOD on July 13, 2011 at 10:19am

Thanks, Tammy. I'm sure your daughter didn't mind taking care of you, which is lovely. There's just so much my mom needs help with, I want to help. I always tell my mom that she took care of me when I needed it when I was young so now it's my turn to take care of her. And I seem to bring so much comfort to her when I visit, I feel SO guilty when I leave, she gets so sad. It's so hard!!! I live 10 hours away, and I've been flying home every 4-6 weeks for a year. I get so tired of the travel, and it's expensive. I remind myself that my mom won't be around forever and I need to visit now. But it's draining. Thanks so much for another mother's input. If my mom could express herself (she has dementia and aphasia from her brain mets), I'd hope she'd say the same things as you, so thank you.

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