Grad student out of state, dad with cancer, separated mum as caretaker

blackscorpion

Hi there everyone.

I've been struggling with a "solution" to this problem for a while now. Here's an abbreviated run down.

My dad was diagnosed with colon cancer in April 2016 and shortly after with prostrate cancer as well. He's since had surgeries for removal (along with a colostomy bag) and is on his second round of chemotherapy. There have been quite a few complications such as serious infections, heart attack symptoms from one of the attempted chemotherapy pills, and now CIPN from the oxaliplatin. The CIPN from his current treatments has made him rethink continuation with treatment. It's stage 3 (as an estimate, his doctor told him it was about a stage 3.7 I guess) and he frequently doesn't follow directives given to him by his care team. I love him dearly, but he's consistently neglected his health. He had symptoms of cancer years before he even went to the doctor, hence it's progressed stage. 

My parents have been separated (but not divorced) for years. There's not a lot of social or just general support in my family (uncles, aunts, and even my two brothers have been very apathetic and completely avoidant) and as a result my mum has taken on the caretaking role. Additionally, she's had to take on most of the responsibilities of my dad's small business. This is definitely not ideal, but there wasn't anyone else. I am in graduate school 12+ hours away and was when he was diagnosed. She's incredibly caring and compassionate (I don't know many people that would be willing to practically give up their life to take care of their separated husband) but this is taking such a toll on her. She's been there to drive him out of town for all of the appointments and just doing the general caretaking. Her life has been put on the back burner and some days it seems like this situation will kill her. She's diabetic and her health and wellbeing has deteriorated greatly and it has only been a year. I don't know how much more of this she can take. Me quitting graduate school to take on some of the responsibilities isn't an option. Some days it feels like I'm their only ray of hope on the bad days; I know it would upset both of them greatly if I quit.

As a daughter to my mum, I want to be able to tell my mum to leave and live her own life, not to be risking her own health and sanity for someone who isn't appreciative of her help and sacrifice. As a daughter to my dad, I know that's not an option. I don't trust him to take care of himself like he should and anyone going through this hell needs someone there. I love them both so much and I feel as if I'm stuck in the middle of this situation, where there doesn't seem to be a correct answer. So badly I want to fix both of their lives and I can't. Is there an alternative that I haven't thought of yet, that doesn't involve damaging one or both parents? 

Sorry for this being so long. I appreciate anyone reading this or any suggestions. I've racked my brain for months and haven't come up with a solution--cue the search for third party ideas. Thank you

 

JerzyGrrl

Solutions / Ideas

Wow. Your parents have been through a lot on a good day, the same for you in graduate school.  Then to have the cancer, business, and other healthcare needs. It's definitely a huge load to shoulder, divided three ways, let alone two. 

You're right that you can't fix their lives. It sounds that it's difficult for both of your parents to take care of their own health needs. But there's the whole "put your oxygen mask on first" reality, just like on airplanes. There may be respite services or home healthcare services to help with your dad's care.  There may be a diabetic case manager with her healthcare group that can give your mum support ideas. Or, if she's been caregiving for a year, it may very well be time for her to have a thorough check-up herself with her physician, and if her health has taken a toll, she may be eligible for support services herself. The numbers to call to find out about that sort of thing may be on the back of their health care cards or connections available through their primary care physicians. But in either case, they're grown-ups and the ones that have to make the decisions as to what kind of care they're going to get and give. 

You say you feel stuck in the middle. Do you think it's because you're an easy person for your parents to talk to? If your role has been that of being a safe listener while they process stuff (or just express their feelings), it's easy to think they're sharing stuff because maybe you should be able to help. I think they mostly appreciate that you'll listen and they know that you care.  Of course you want the best for them, which makes it even harder.  I hope you've got a counselor at school who can help you process this, continue to process this, and be a good listener for you, too.  You all deserve the best. 

My parents both found so much fulfillment and satisfaction that I made my own life, worked hard, and graduated from college and grad school, so I get how important it is for you to be doing that (for you, too, not just for them).  Being able to talk to them on the phone, write notes, send emails, and/or Skype (or a similar video connection) could be good ways to structure some times in your week to connect. That will give you some space to be a student yet still be their daughter.  And remember your own self-care, too. 

All the best.  Keep us posted...

Jerzy

blackscorpion

I think both my mum and I

I think both my mum and I have been forgetting or at least struggling with that "put your oxygen mask on first" concept. It's too easy to get into the thinking of "Why am I prioritizing [this situation involving me] when this person I love is dealing with much worse". She gets fairly regular checkups for the diabetes but she's taken some falls this year and started experiencing different symptoms. I'm mostly concerned that the stress combined with everything else is getting to be too much.

I mostly feel in the middle since what seems to be "right" for my mum's life isn't "right" for my dad. Ideally, they shouldn't live under the same roof and then work together too. They're very much opposites and end up having to spend a bit too much time around one another. It probably compounds the problems more. My dad is incredibly quiet (to a disadvantage, that he won't volunteer information about how he's feeling, etc) so we don't talk too much about the situation but my mum talks to me about it all. You're definitely right that it's just as an outlet to process things, not as a way of asking me for help. It's just so frustrating wanting to "fix" things and not being able to. I need to work on just listening without attempting to fix things, for sure.  

Thanks for all the kind words and good advice. Some of it is stuff that I should already know (but of course neglect to do) and it's helpful to hear it from someone else. Thanks again. n_n

 

JerzyGrrl

blackscorpion said:

I think both my mum and I

I think both my mum and I have been forgetting or at least struggling with that "put your oxygen mask on first" concept. It's too easy to get into the thinking of "Why am I prioritizing [this situation involving me] when this person I love is dealing with much worse". She gets fairly regular checkups for the diabetes but she's taken some falls this year and started experiencing different symptoms. I'm mostly concerned that the stress combined with everything else is getting to be too much.

I mostly feel in the middle since what seems to be "right" for my mum's life isn't "right" for my dad. Ideally, they shouldn't live under the same roof and then work together too. They're very much opposites and end up having to spend a bit too much time around one another. It probably compounds the problems more. My dad is incredibly quiet (to a disadvantage, that he won't volunteer information about how he's feeling, etc) so we don't talk too much about the situation but my mum talks to me about it all. You're definitely right that it's just as an outlet to process things, not as a way of asking me for help. It's just so frustrating wanting to "fix" things and not being able to. I need to work on just listening without attempting to fix things, for sure.  

Thanks for all the kind words and good advice. Some of it is stuff that I should already know (but of course neglect to do) and it's helpful to hear it from someone else. Thanks again. n_n

 

Yes...

You're welcome. Hang in there. 

For many of us, there's that weird time as you're growing up when you realize that your parents really shouldn't be together. To the point where you want to know WHAT were they thinking?! But that's where you've got to tread lightly: If they hadn't connected at some point, where would you be? 

jorles

When I read this I thought

When I read this I thought this could have been written by one of my daughters!

I am a 12 yr survivor of melanoma and currently in treatment.  My husband had his second major stroke when my daughters were 3 and 6 (his first was before they were born).  After he recovered we separated and he eventually moved to another state.  He also does not follow doctors instructions and has since had a heart attack, been hospitalized for diabetic shock, and another stroke.  We (my daughters and I) moved him back to our home because he was no longer able to take care of himself.  He recently had triple bypass and has a few more proceedures left.  I tell you this so you can get a picture of the situation.

My youngest daughter has just earned her Masters.  I am in your moms position.  I can tell you that the last thing she would want would be for you to give up your studies.  Neither she nor I are in the position we would want to be in but life leads you down different paths.  Our children are a reflection of our pride and accomplishments.  She wants what is best for you.  She's got this.  She just has to be reminded on occasion to step back  and give herself a break.  Maybe what you and your brothers can do is to come up with a plan to give her some " time off" occasionally.  You may not be able to do this until your breaks but that will work.  This may be just a few hours to herself.  Maybe an excercise class.  Look into what assistance programs there are.  If your dad has to go to regular treatments the American cancer society has a program called Road to Recovery where volunteers will take him to his treatments.  That will free up a little time for her.  She may say "no I'll take him" but this is where you say "you need a break, let someone help".  A lot of organizations offer programs for caregivers.  Check out a local YMCA to see if they offer something.  From a moms perspective I know that we don't want our children to bear our burdens.  While I want my daughters to be aware and compassionate I don't want this to engulf their lives.  Everything you experience in life makes your stronger and wiser.  You sound like you are learning a lot and I'm sure your mom is proud of you. Take care of yourself too.