Anyone out there taking care of an ill parent?

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  • #29563
    NanonNanon
    Participant

    I’d love some feedback, because my situation is just about as hairball as it could be right now…

    I’m 33, the oldest daughter of an unmedicated schizophrenic woman who is currently fighting breast cancer. I’m pre-med at Cal, married and seriously considering starting a family of my own.

    I’ve been taking care of my mom (pretty much by myself) the entire time I’ve been in school. That’s about eight years of undergrad. It was really difficult at first, but as time went on, I learned some skills that made time-management a little easier. In other words, I had it down to an art form.

    But then she was diagnosed with stage 3 breast cancer in October, and ever since, my life has been in a state of barely contained crisis. Because she lives fairly far away from me, I’ve been commuting 160 miles rt for every doctor’s appointment. Because she lives in a tiny rural community, she’s been getting her care and treatments in San Francisco (which means, essentially, that she’s been living with us part-time). All of this has meant a real slow-down in my education and work, a huge strain on my marriage and a disintegration in the relationships I have with my family members.

    The good news is that, eight chemo tx’s and two surgeries later, she’s apparently cancer free. The last biopsy came up with no cancer. The bad news is that we still have radiation to go. Initially, I thought that radiation wouldn’t be a big deal, esp. because she didn’t have any pathological cancer show up in the biopsies. So, of course, I signed up for 15 heavy units.

    Turns out that she’ll need radiation EVERY DAY for 5 WEEKS. Starting about a week before I start school. This means that she’s moving in with us for real for 5 weeks. Did I mention that she’s an unmedicated schizophrenic?

    My family (including my sister) have been of almost NO help though all of this, so I can’t expect much help from them now. And I’m at my wits end. I have worn out my “This, too, shall pass” mantra. In my darkest moments, I wonder if I’ll ever be able to graduate, have my own life, have kids, let alone go to medical school. I worry about the fact that my mom is just going to get older and sicker, and that this might just be an appitizer for what’s going to come. I worry that I’m becoming selfish and bitter, that I’m losing my compassion.

    So I need some sage advise from you people. You always seem to come up with such wonderful words of support. I could use a few now myself,

    Nanon

    #29564
    pkmaglepkmagle
    Participant

    Dear Nanon,

    Wow, that is a load! Are you in a situation with your mother’s physician where you can share her mental state with them? It would be helpful for them to know as they care for her. They (or some of their staff) may have some helpful suggestions for you and your mom.

    I’ll be thinking of you.

    #29565
    NanonNanon
    Participant

    Originally posted by pkmagle:
    [b]Dear Nanon,

    Wow, that is a load! Are you in a situation with your mother’s physician where you can share her mental state with them? It would be helpful for them to know as they care for her. They (or some of their staff) may have some helpful suggestions for you and your mom.

    I’ll be thinking of you.[/b]

    Thankfully, all of her docs (oncologist, surgeon, etc.) have been great about her psychiatric stuff. I told them right off the bat, because I was worried about what the tx’s (esp. those that needed steroidal support) would do to her head state. And, I wanted to make sure that they wouldn’t freak out too much when she launches into one of her conspiracy theories. The support staff have been even more wonderful and understanding. But, boy, am I tired.

    Thanks for responding,

    Nanon

    #29566
    DuckDuck
    Participant

    Nanon:

    I FEEL for you and can IDENTIFY with you. Three years ago, my mother and I were co-caretakers of my maternal grandmother. She suffered with Alzheimers’Disease, pancreatic cancer, Parkinson’s Diesease, and some form of psychosis.

    Although I have two healthy sisters in the city…they were virtually invisible. My brother who lives out of town did not visit until the end. My grandmother succumbed to the cancer recently.

    We actually moved her (tricked her into coming to Ohio). There were many outside relatives trying to dictate and critcize our every move…but surprise surprise no offers of help from them!

    My mother and I are still very drained and tired from the experience. We really have not mourned properly. At the time, I was married. My separation had nothing to do with this experience, but you are right when you say it puts a strain on the marriage. You are definitely in need of Respite Care.

    Our family physician put us in touch with various associations for the elderly, etc. This led to us getting her into daycare so that we could work and rest a little.

    Is there a reason she is not medicated for the schizophrenia? You mentioned that she will be with you in San Francisco for awhile…I would really look into Association for the Elderly. Believe me they have seen it all. Forgive me if you have already done your research on this stuff. If I think of anything else …I will definitely let you know.

    Daphne

    #29567
    bjwarrenbjwarren
    Participant

    I can identify with you. My maternal grandmother was in late stage Alzheimer’s and dementia when through my mother’s guilt of not being able to take off of work to care for her that I moved in with her to care for her.

    I was about four months pregnant at the time and realized that the relationship that I was in was never going to get “better”. Due to the pregnancy, I had already not enrolled for any more classes. Very rapidly, my grandmother lost much of her muscle control. She had to picked up and placed almost everywhere. And, she thought that she was still OK. She was always soooo independent that this was killing her. She refused to admit that she needed help; in turn, she became violent on top of everything else.

    I talked to my mother about this to try to hire someone to help me. We decided that we would really need at least two people 24 hours a day. Financially infeasible. No matter how horrific the idea seemed to us, my grandmother was placed in a home. This really hurt, I felt like I had failed her!

    It is so hard caring for anyone like this, but especially those that we love! No one wants to see their loved ones in the light that illness can present us in.

    I don’t know if my experience has helped or not, but I just wanted to let you know that you are not alone. It is hard, but you sound like such a strong and wonderful person. I don’t know if I could have balanced all of that and handled it as well as you have.

    Congratulations to your mother on no cancer and to you for your caring nature! Good luck to you!

    😉 Brandi

    #29568
    NanonNanon
    Participant

    Thank you all for your wonderful replies. I’m surrounded by 20 y/o students who really don’t get what I’m going through during the school year. During my breaks, I feel guilty because of all the time I have to take off work because of my mom. Don’t get me wrong, my co-workers are great, but it sucks knowing that my chaos affects them, too. I guess I’m just saying that it’s nice to know that I’m not alone out there.

    To answer some questions: Mom isn’t medicated because she doesn’t want to be, and I can’t make her. She doesn’t really believe she has schizophrenia, which isn’t helped by my family, many of whom also believe she doesn’t have schizophrenia – she has a “character defect.” But I digress. This has meant that almost any agency who could help me, won’t, unless she’s medicated. I guess I can’t blame them, given how much of a bad rap schizophrenia gets in the news. It’s frustrating, though, because she’s not violent in any way, just weird.

    I am going to get in touch with the Association for the Elderly. She’s only 53, but maybe they’ll be able to send me to other resources. The other thing I’m going to do as soon as I’m back in classes is get myself to a therapist! 😉

    Thanks again, all of you…

    Nanon

    #29569
    asunshineasunshine
    Participant

    Nanon, your words really struck a chord with me.

    My now 18-year-old brother was diagnosed with sz when he was 16. At that time he would have bouts of hostility (hit my mom, yell and scream for the whole neighborhood to hear) that were so bad my parents called the cops on more than one occasion. My parents, too, thought it was a “character flaw” (stodgy German upbringing) until they saw how much better he got with not even a week of medication. It was like NIGHT and DAY. Like we had the old Christian back.

    It was not a fun journey. It took months and 4 different doctors/psychologists to convince my brother that he had to take medication. My parents had a hard time coming to grips with my brother’s disease, too, especially breaking the news to family and asking for support/favors. Things are much better now (he’s going to college in the fall!) thanks to tons of caring people and family members.

    I don’t know what advice I can give you other than what you already know, but here’s my $.02:

    1) TAKE A NAMI CLASS. The nat’l assoc for the mentally ill is a huge group with excellent resources. Most of the people in the class were like you–at their wits end, struggling with relatives that were untreated. My family felt like we had it easy compared to them! The class gives you tons of resources on how to find help (gov’t and otherwise) even though your mom is unmedicated, tips for you to keep your sanity, and effective ways to deal with someone who’s irrational/psychotic.
    2) Try schizophrenia.com. There are forums with sage-like mommd-style advice and they’re HUGE! It’s a great place to find a support network.
    3) Get thee to counseling and drag everyone you can along with you! Maybe your mom or significant other would be more likely to go to a joint session if they went to “support you”.
    4) If you’re a churchgoing type, find a bible study for people in your kind of situation. I can’t think of any other way to find a true peace.
    5) You’re not alone! You won’t believe how many people right under your nose have a schizophrenic/mentally ill relative. It’s estimated that 1% of the population will have sz in their lifetime. One in 100 people! Think about it…

    Did I mention you’re an AMAZING lady?? You probably don’t hear that enough, but remember that we all think that (and I’ll bet most of your med student classmates think so, too).

    Best of luck, God bless, and warm wishes,
    amy (PM me anytime!)

    #29570
    LaramisaLaramisa
    Participant

    I second the advice about getting some support through NAMI or other organizations who have support groups for families of patients with mental illness. My 2 years older sister was diagnosed with schizophrenia about 25 years ago when we were both in college and there was nothing then to help guide or support families in how to help the ill family member. It was also a time period when a lot of therapists were blaming mental illness on the family and upbringing (esp. the mother)- which is pretty tough since the family is then left to pick up the pieces.

    It is incredibly draining (my sister also refused treatment after her initial hospital experiences & is still untreated) I spent many years dropping everything in my life to try to help her (and my mom, who was overwhelmed by the whole thing) when she had a new crises. I ended up taking alot of time off work and school.

    When I was in grad school I eventually I went to see a counselor for myself to help put things in perspective and decide how much I was really able to give without giving up my own life. This really helped me. This was about 10 years of my sister’s illness started and I was still getting regularly getting crisis phone calls in the middle of the night.

    I don’t know if this helps, but I very much sympathize with your situation. Remember to take care of yourself too or you won’t be able to help her. And try to get your other family members to help out more if possible.

    LM

    #29571
    NanonNanon
    Participant

    Amy, I’m definately going to a NAMI class, but I’m a little nervous about it. The impression I got was that there aren’t that many groups (if any, right now) that are specifically designed to deal with the issues adult children have in caring for their parents. Most of the groups are primarily for parents and siblings. I’m sure I’ll gain a lot from it, but I think some of the harder issues I’m having will have to be worked out in therapy.

    I’m actually a moderator on sz.com (the offspring board). I have found a lot of comfort there, but unfortunately there aren’t a lot of pre-meds or docs there for me to commiserate with.

    As far as my spirituality goes, I’ve gotten back into the habit of meditation and prayer, and it is helping to at least relax me.

    Laramisa: One of my biggest fears right now is how I’m going to juggle grad (whether med or otherwise) school with what we jokingly refer to as “mom duty.” As far as my family goes, I’ve been asking for help for eight years from all of them, at help has not been given, so I’ve pretty much given up on them ever stepping up to the plate. (Do I sound a wee bit bitter? 😉 )

    Again, much of this will have to be worked out in therapy, but I want to say THANK YOU to everyone who’s responded. What a blessing this place is.

    Nanon

    #29572
    SpiritDoc2B_dup1SpiritDoc2B_dup1
    Participant

    Hi,

    I was in the exact same situation a few years ago after my father had a stroke. I made the choice to not go to medical school to keep him out of a nursing home. He came to live with my then husband and daughter while I attended graduate school during the day and worked the “graveyard” shift at night. After about a year of this, I ended in the hospital with pneumonia and almost died from it (I also almost got kicked out of graduate school too – thank goodness for the incomplete grade notation!)

    After I was released from the hospital 2 weeks later with an additional six weeks at home, my grad advisor told me that I needed to to choose between taking care of my father or my education. Five months later, my Dad went back to Florida I think to be with the girlfriend that didn’t want anything to do with him after the stroke.

    The ONLY help I had during this time was my husband and my marriage certainly suffered (We’re divorced now). One person just can’t do it all and my Dad’s family was no help. However, the only thing I would do differently is take out school loans for extra income and get divorced sooner!

    Finally, there are many social organizations that might be able to help you so you should look in your area. Hope this helps.

    Kim

    #29573
    BBdocBBdoc
    Participant

    Dear Nanon: What can I say… I’ve been taking care of my Dad for about 18 years, with every crisis people seem to vanish, My father lives in a different country, so it has meant having my life and that of my kids virtually on “call”, We have had my Dad (a retired Surgeon) live with us many times, turning the house into a small ICU. The reason I figure our sibs wont help is because they know WE will take care of things, and as the years go by, they distance themselves more and more from the situation, after all we “always” manage to do everything. A few months ago I finally came to the end of my rope, my Dad has been Dx with cancer, and at 86 with 10 other chonic conditions chemo was out of the question, anyway, I finally sat down with my only cooperative sib, and in very simple words told him the responsability needed to be shared, emotionally, physically and financially. Guess what? He has come thru and life is much more livable if you will. I also found some caregivers, called companions, that in your case will help take your mom to chemo. Also call the cancer center, many have volunteers that help with transportation of patients to and from chemo. Senior Services is as was mentiones another good resource. Talk to the Social Worker in the clinic, they also have “respite” care so you can get a break. Good Luck!!! Keep us posted

    #29574
    KelddyKelddy
    Participant

    Hey Nanon…it’s me Kelddy (your Cal friend)? You said that your mom was going to move in 1 wk before school started? Has that happened yet? Did you already start your therapy? Wow…you do have alot on your plate ~and looking far into the future (like you mentioned) may not be the best thing right now. 🙁 I wish you all the blessings as you also try to start a family and will now live my much desired dreams through you unitl next summer(that’s when my husband and I will try to start a family of our own too!) I am ready now…however my husband wants to buy a house first. Well, Nanon…God Bless, take care and yeah once I get situated with school I would like to hook up with you. I will be commuting by BART from Pacifica to Berkeley and taking the shuttle to campus. Any pointers or things I should know? Do you commute by car or BART? Well, take care.

    #29575
    DONOTDELETE ****DONOTDELETE**
    Participant

    Nanon and everyone else who is going through (or has gone through) caring for an ill parent my heart goes out to you all. I am currently taking care of my mom who has terminal cancer. I can’t imagine adding mental illness to the current strain. It doesn’t seem possible. But then again, if there is one thing this experience has taught me it is that you adjust to everything. Just when it doesn’t seem like it can’t get any worse – it does.
    I highly recommend therapy, because it is a lot to go through alone. As for unhelpful family, have you tried directly telling them that you would appreciate more help on their part? They may feel like you have it all under control and there is nothing they can do. (or they could just not care…. grrrrrr.)

    I also want to pass along the following advice: you have to still live your life. Hearing this prompted me to sign up for the remaining pre-med requirements I still have left. (2nd semesters of orgo and physics – can’t wait for the fun to begin!!)

    Take care of yourselves and good luck pursuing your dreams.

    #29576
    NanonNanon
    Participant

    I just wanted to say thank you to everyone again for all of their kind words of support. I’ve revisited this post a few times when things have gotten out of hand through all of this.

    An update, in case anyone was wondering how this is working out:

    I was wrong about how long she would need radiation. We are now in week four of SEVEN weeks… it’s been pretty rough, but so far somewhat managable. My gpa is gonna take a hit, but I’m still in all of my classes. I keep reminding myself that this is temporary, that I’ll have two more tests to make up for my less than stellar performance on my first mid-terms.

    The radiation is going pretty well. It’s funny – all of us family members in the waiting room have become like a support group! We see each other every day, and compare notes on commute times and prognosis and just the general hassle of it all. Mom’s starting to get the “sun-burn,” and the low energy thing, but she’s really being a total trouper about it all.

    This is not to say that we haven’t had some problems, the biggest right now being that she’s starting to depend on me for things she shouldn’t. Things like finding her way to the doctor’s office once we’re in the hospital, or getting small chores done. That’s starting to change a little, but only after a few major arguments. I’ve done a little research on this, and it’s normal – but it’s frustrating.

    I haven’t gone to NAMI – I haven’t had time! But I did finally have it out with my relatives. I told all of them that if I didn’t get some help, *I* was going to have a nervous break-down, and then they’d have to take care of her anyway. It worked. My aunts are helping with the driving on the weekends (huge! The drive alone was starting to make me insane) and my sister and I are working out long-term financial stuff. That’s also huge. Taking care of a cancer patient is expensive! Also, my husband has started taking a day off a week to take my mom in, so I can have a little extra study time. Thankfully, his boss is completely understanding about it, and the hubby is able to work at home on those days.

    I think the hardest thing for me personally right now, beyond watching my mom go through all of this, is school. People at work and at my volunteering are so supportive, but people at school (professors, counselors, and esp. other students) are the polar opposite. I’m not doing too well on my midterms, not because I’m not studying enough, but because I’m freaking TIRED. (I slept 12 straight hours last Wednesday after my neuro exam.) I’m not used to doing that badly, and it doesn’t help when my fellow students look at me like “What happened?” or say things like, “This is easy – what’s wrong with you?” (Yes, someone actually said that to me.)

    Anyhoo, that’s all for now on this front. I hope everyone is doing well, and thanks again!

    Nanon

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