ladycatherina (ladycatherina) wrote in caregiving,

New member, asking a few questions

Thank you very much for starting this group! Looking forward to meeting you all and sending love and prayers, hope to offer support and encouragement to everyone here.

Hi, I'm Cristina Deptula, and I live near San Francisco. I'm in my late twenties, and I've assumed caregiving responsibilities for a very good friend I've known for seven years. She's a widow with children, estranged from her family for a variety of complicated reasons, and I'm basically all she has left (and we're trying to change that!)

She has adult ADD, narcolepsy, and Jealous and Persecutory Delusional Disorder - so she cannot keep to any kind of schedule, falls asleep at random times of the day and night, and has trouble getting along with others as she can get frustrated and paranoid. She's also the victim of emotional abuse as a child and domestic violence as an adult, and some of her issues stem from that. Now, she's
been diagnosed with ovarian cancer and is undergoing chemotherapy, and has diabetes and weight problems as a result of some of her mental health medications...and she's only 43!

I live about 45 minutes away and do a lot of work for her over the phone and email (selling items on Craigslist for her to help her make extra income, making and reminding her of medical and dental appointments, looking up social services and filling out applications, locating and hiring in-home supportive service
caregivers - she qualifies in Marin County to have someone help out around the house about two hours every weekday, which helps but she calls and texts at all kinds of random hours asking me to make phone calls for her, so she really needs someone who can be on-call, or a team of people.)

I'm all right helping her for now, but would like some way to know what's realistic for her to eventually learn how to do for herself and what she will need assistance with all her life and isn't fair to expect her to handle.

Also, I'm currently 'between jobs' and staying with my parents, who don't understand mental illnesses in general and believe my friend is simply taking advantage of me. It's awkward to have to step out of the house, excuse myself from dinner, etc to make phone calls or look things up online for my friend without them noticing and complaining, and my friend then gets mad about my procrastination and the delays in my helping her. And I don't have any money now myself, I'm selling some of my things on Craigslist to pay off a traffic ticket.
My friend only gets $700 or so a month from SSI disability, which ends up being $300 after she pays her rent. She has two teen children who are staying with her mother because she's too sick to care for them, who don't understand why they've never been able to wear new clothes, own IPhones etc like other young teens in Marin. We go on Craigslist every year to look for donated gifts but this year
the economy was so bad no one was able to come through and help, so we're looking for gifts after the holidays.

I'm looking into work-from-home opportunities so my friend can earn some money on her own and gain some more self-respect, even survey taking opportunities that aren't marketing ploys or scams. Also, something for me so I can help her out and get cash for the gas to drive to and from her place and regularly visit her...she's not near mass transit. I'm currently only making $12 an hour for a
part-time telecommute position that leaves my schedule free but leaves me broke!

Also - I'm looking into internship and full-time work opportunities which would be great for my career but which would leave me less able to care for my friend at random moments. The personal calls and time on the Net became an issue in my last fulltime job, and in order to work like a normal person, we really need a larger support system for my friend. I'm committed to NOT abandon her, but know that I'm going to need to recruit other caregivers to be able to move forward in
my own life, and my parents just took on another financial commitment and say they can't support me forever. I'm also in a relationship which may be heading towards marriage and children, and my boyfriend said a few months ago that if we're going to stay together I have to set boundaries with my friend so that our kids (and his emotional needs, etc) won't get shortchanged. For many reasons we need a group of other people my friend can call upon for help when she can't
reach I'm not able to help out on call 24/7 for the rest of her life, even though I've been doing that since her husband died in September 2006.

So - does anyone here know where to go to recruit additional helpers as an internship-type opportunity? We can't pay for much of anything now but would be glad to reciprocate in other ways (resume editing, proofreading, letters of recommendation, etc?) I see blogs of well-connected poets, singers, etc who have whole legions of folks helping them out, sending care packages, checking in with them, etc and would like to know how to build a support network.

I recently posted this advertisement for assistance on Craigslist:

Please let me know what you think - I'm trying to strike a balance between compassion and trying to empower my friend to take care of herself.

Thanks, sorry for the long post!
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Wow, you have taken on a lot. I have a few questions you should ask yourself.

Am I enabling her in any way?

Is she getting all the professional assistance and support the government can give?

Am I making myself liable in any way by setting up arrangements with strangers to "work" for me with this woman. (If you have any kind of contract, they could blame you if they are hurt somehow in their dealings with her.They could even sue.)

What are my true motives for sticking with her this long since it seems to be jeopardizing my own personal relationships. Perhaps I need to look at my own priorities and boundaries.

Have I exhausted all the community support mechanisms in place before taking on responsibility for her in such a personal way?

I don't mean to rain on your generous parade, but you should not martyr yourself and your personal life for this woman. I applaud you for taking on her care-giving, but any family she has should be the first ones to be responsible for her. I also doubt that she could ever be independent since she is a mature person and set in her ways and habits. People will not change unless they themselves know they have to and I doubt this woman thinks she needs to do anything different. She will most likely continue,believing everyone else should change to suit her.

Kara - thank you very much for your reply and your advice! I've received similar thoughts from others in other online support groups, so no offense taken.

In response to your questions:

Yes, I'm open to the possibility that I might be unintentionally enabling her or not handling her conditions in the way that would best empower her to become more independent. Sometimes, honestly, it's easier to simply handle things for her rather than taking the time to think through how to guide her into independence or gently set limits. So, I'm here to learn how to help her become more independent, see what has worked for others. Want to help her learn to walk, without leaving her to fall flat on her face. Also, I need to do more personal research into her disorders to know how best to work with her without frightening her or seeming simply uncaring or tired of her.

To my knowledge she does not abuse alcohol or drugs, but she does have a pattern of getting into unhealthy relationships and having others hurt and abuse her...she actually suggested that we attend codependency meetings together, but then backed out because she thought I believed I was codependent with her and that that was why I wanted to go, even though I never brought up my relationship with her when I talked about the CoDa meetings. The greatest gift I think she could give others would be to become healthy and stable herself.

I came to this group in large part because we're looking into how to build a larger support system for her...lots of times this sort of thing happens organically, out of groups of friends, support groups, etc. Would love for her to be around more healthy, balanced people she can learn from, and for her to have a gameplan in place for the needs I will inevitably be unable to meet in the future. Do you or others have any ideas there? Where did you go for support for the people you care for? My friend's also embarrassed by her poverty and her conditions, so we need a few more mutual friends who won't judge or gossip, and whom she feel safe opening up to.

Is she getting all the support the government can give? I hope so, not sure. She does get SSI Disability, subsidized housing, and a caregiver in her home for 60 or so hours a month, as well as Medicare to pay for some of her prescriptions. Looking into other resources though...she normally comes to me asking for help with specific projects, and she's seeking out government and other resources herself. But if there's something in the area we may have overlooked, please let us know! She tends to ask me for help managing the services she's already qualified for - calling to see if the bank's still open so she can cash her disability check, finding a doctor who will accept new Medicare patients, reminding her apartment manager about her upcoming move, etc. The Center for Independent Living does offer advocacy, I've sent her the link to that. What she needs is some type of personal part time secretary on call, or the skills to do that herself...not sure where to go for that.

Am I making myself liable...most likely not since we don't have formal contracts, it's just agreements among friends and Good Samaritans. And I don't have any money that would make me worth suing ;)

What are my true motives - another open question. Sometimes when I help her finish a major project or handle something big for her, I feel a sense of accomplishment - but then I also feel that when she lets me know she no longer needs so much help and is getting better. So I'm not sure, but I am discussing this with friends and a psychiatrist, so very open to the possibility that my own issues may be contributing to hers.

Community support mechanisms - we are using some of those whenever we can, and looking into those. Budget cuts make things hard though, also her narcolepsy, as people who don't 'get' that condition can think that someone's just lazy if they miss appointments or don't follow through on applications for services. She falls asleep at random times of the day and night and I don't know how much she can help that.

I joined this forum to locate community support - referrals, or even people here who might want to join her support team! She and I would both love for her to have a larger group of healthy, balanced friends whom she can learn from and who'll have the wisdom to pitch in to help when needed, or encourage her to handle things herself, and know when to do what. This sort of thing happens organically though, out of groups of friends and support groups..and I'd like to know where to go to facilitate that.

Been brainstorming ideas about how to inspire her towards greater independence, off and on for awhile. I asked my boss at the publishing company if he would consider hiring her to work from home sending business emails on her own time...she's quite good at that and I was very excited that she wanted to work, but she's contacted him more than once now and he's ditzy/swamped with emails and hasn't gotten back to her yet. She's still interested though and I reminded him about her yesterday in an email - so cross your fingers that this works out!

Wanted you to know that she'd worked with me in the past editing resumes and that she was willing to work, so you could get a more balanced picture of her, rather than just someone who's needy and incapable. I do see her as a friend as well as a responsibility...she loves children, Broadway musicals, hippie artifacts, the ocean, hiking, etc. and is a person, underneath the stress she's living with.

And we'd like to continue exploring work-from-home and writing/editing opportunities for her...she alternates between being excited to work and earn cash for herself, and feeling overwhelmed with life. Something to step her into gradually. Are there any opportunities that people in this group know about? Any telecommute positions or survey taking etc stuff from home?

My friend's family - they have mental and substance abuse issues of their own and those in the area are not in a position to help. We're looking into some counseling resources to help her build better relationships with her teen children and her husband.

Thank you again for your advice and support, wishing you the best with whatever personal battles you are fighting yourself.
Hey there, I'm not sure if you're still looking for online job opportunities as this was posted a while back, but a friend of mine recently recommended a couple of sites that he personally works for from home.

I don't have any personal experience with the sites (yet), but I've been told that they're legit and very professional. I hope this helps. Best of luck to you and your friend.
Thanks so much! Will take a look at these links and will pass them along to an online caregiver support group I've joined. Wishing you the best.