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me: 53, had 30-yr freelance career on the road in media industry, never married, no kids, financially diligent over the yrs; brother: 48, has kept steady gigs for yrs, married over 15 yrs, 2 pre-teens, lives paychk-to-paychk, recently disclosed a longtime gambling addiction, his wife had to tk control of their finances recently because he even tapped the kids' college fund.


mom: 82, recent cancer diagnosis, ok prognosis, but will need treatments for years to come (we have been taking her weekly for the past month, shes responding well), dementia, starting to hv memory issues, mobile but can't live alone safely, not social, no financial knowledge whatsoever. dad: deceased 3 yrs ago, he was 89, he handled all money and home upkeep thru their 53 yrs of marriage, ignored mom's hoarding as long as her stuff didn't comingle with his lean military lifestyle on a separate floor of the house.


NOW: parents convinced me to move bk into the house 'for a year' while readjusting to hometown, which i moved bk to make sure they were ok in their 80s and to change work style from road to more settled. that was 5 years ago and i'm still here! dad's health was failing, and all were in denial, so i jumped in to be his medical advocate and caregiver, he got a staph infection after a surgery, and passed away within 2 yrs of me being bk home. mom tried to handle bills etc after that, but just didn't 'get' how all that works, so even tho our $ was and is separate, i just started paying for stuff out of my life savings. i live with her in her 3-story rowhouse, a third of which is all her hoarded paperwork from teaching and old magazines, as my ready-to-go lean apartment life sits in waiting at a local storage facility. we just got around to convincing mom to do a simple will, her assets will be split 50-50 me and bro, and i am financial poa, bro is medical. here's the rub - when she first got bk from hospital, her meds made her almost comatose, so I was thrown into hands-on caregiving first time, around the clock, incontinence and all - wow. she's better now, but i still help her get dressed, cook all meals, keep up the house, etc can't leave her alone, and bro can only relieve me on saturdays, and that time goes to grocery shopping and a solid gym workout.


I am now on the second parent as a caregiver and am trying to keep burnout and resentment in check, but i live very comfortably here and have low expenses. however, i need to get things started so i manage her care more than provide it, especially thinking long term, seeing as her needs will only increase. i also need to get back to work, so as not to jeopardize my retirement and have a life outside of the house, even just part time, but any work i get will not be traditional office work 9-5, more like filming or covering events to write about. mom gets SS and teacher pension and has ira and inherited dad's savings of about 300k. i have saved over 200k, but very little of that is in retirement funds. i would actually be ok continuing to live with her for the rest of her life, as she does not want to do assisted living. i think that could work but maybe in a retirement community, definitely in a smaller house, with more separation of bedrooms, an office for me, etc, and outside help would have to be hired to come in daily and help her in the home 'dayshift', and some overnights if i would be away on assignment, then we adjust adding more services over the years, etc. this is just now unfolding, and i am trying to think ahead and be proactive. i am flexible and feel confident i will fully get my life back eventually, but i need BALANCE moving forward. any ideas on how to make sure mom is taken care of, without sacrificing my future, and realistically doing it with no help from my well-meaning (but non-factor) brother? thanks for any advice!

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Great suggestions here from everyone! I would think that hiring in-home help (from your mother's funds) to care for her so that you can work part time would be a good idea. You seem to want to continue living with her but you absolutely need outside activities and keeping your hand in work sounds like a good plan.

Read through all of the answers and see what seems to fit for your situation. We have some very wise people on this forum.
Do take care of yourself - you must or you will burn out.
Carol
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First, if she has assets use her money for her care, not your money. You can do this with your POA. And if you have not already done so get total control of her finances to avoid scams and embezzlement.

You are young. For you to get your life and career back on track you have two choices. Either arrange comprehensive in home care for her or begin looking at a continuing care facility, assited living progressing to skilled nursing care to memory care if needed someday.

Your roles are now reversed. Just like when you were a child your mom is going to have to make some changes she doesn't like. It will take a little tough love but don't sacrifice the best years of your life to your moms care. It doesn't have to be that way
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I agree spend your Mom's money on her caregivers.

I live with my Mom in very similar circumstances - I found people who will work for $10 an hour and are VERY good and responsible.

To keep my marketable skills up I work part time in an office. Small profit paying the caregivers $10 an hour, but the work AWAY FROM MOM keeps me sane and is a good investment for the future after Mom leaves this earth.

I plan a lot about my own future, work hard to take care of myself. You are still very young and must think seriously of your own needs. This caregiving will not last forever. You sound like you have a good head on your shoulders. Watch to avoid burnout. I hire caregivers and to play tennis. Be very kind and good and compassionate to yourself.
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I had a longer answer, but the site lost it somehow. So, I will summarize: use your mom's money to care for her (if the day comes that she goes into a nursing home, they will take all her money and her house to meet the spend-down requirements for Medicaid...if you spent your money, then where would you be?!). Before doing much freelance, have your support team in place (trust me, trying to do freelance work, especially to meet a deadline, and having to take care of a parent who needs help us VERY stressful), and try to get your social life in order (join a book club, go to a work out class at least twice a week, meet with a friend for lunch once a week and with a friend who will not evaporate if/when your mom gets worse in the memory department). One of the people who responded is Carol. I would highly recommend that you buy her book Minding Our Elders. And, we are always here for you. Oh...did I tell you to spend your mom's money on her? :). Hang in there!
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SallyDaughter, as one freelancer to another I'd say be very careful. It's a question of headspace, I think: if you're on the premises, it is - or I found it so, anyway - incredibly difficult to focus on work and ring-fence uninterrupted time. In the end I gave up. You sound a great deal better organised than I ever was, but all the same; if you can, I'd have an office or a studio somewhere else: a place you go to to work so that everyone - mother, in home caregivers, others - knows you are At Work Now.

Best of luck with it, keep updating.
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Just one woman's opinion:

You are lucky that your brother is staying out of it. It gives you freedom to make decisions.

Also, since you have done this before, you know that what you might be ok with today, may not be the situation tomorrow. Things get harder, not easier. Prepare mentally!

From what you have said about your retirement funds, I would use that as a starting point. Talk to a financial adviser to see what your situation will be financially. What do you need to save now, how, etc. Go from there.You may have a different perspective after that conversation. Right now you want balance. We all do. But safety first: if you need to stay with your mom and face a bit of discomfort, well, it may be worth the sacrifice.

As for your mom's clutter, I am laughing abut that. My husband is the same way. I am a neat-nick and he is a hoarder. Just ignore it, and, when the time is right, you will get it figured (thrown) out--so will I.

There are lots of little ways to find balance without jeopardizing your financial security.. Exercise, meditation, reading, etc.

You sound very smart and mature. You will find your way.

Good luck!
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Find a reliable caregiver while you continue to live in the home. Set yourself up as the "Manager" and do just that - manage your mother's care. You can become as involved as you see fit but be there to make sure your mom has and is getting everything she needs. You may need to go through more than one caregiver but when you find the right one, most of the stress and worries you have now will disappear, you will find you have time for yourself as I would venture a guess this is really being undercut. Pay the caregiver well; once you find the right one, hundreds of problems will disappear. Your mom is going to need increasing amounts of care as the disease progresses. Get all your paperwork in order (i.e. Power of Attorney, bank account signer, Trusts, all of it - you may want to establish a relationship with an attorney specializing in Elder Law) and just forget about your career for awhile - unless you can pay thousands for her care in an assisted living home. It is probably going to be one of the biggest challenges you will ever face. I've been through it; 7 yrs of taking care of my mom who diminished before my eyes. But I managed to keep her at home until she passed away in her own bed. I know somehow this meant a lot to her. May I also suggest that you get a doctor's order for Hospice care? Since Alzheimer's (if she has this, you must get a formal diagnosis) is fatal, your mom would qualify for Hospice. No matter how long the monster (as I call this disease) takes, hospice will be there for both you and your mom. Lots of hugs and warm wishes to you.
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All of these seem like great suggestions. After you get some outside support and systems in place, you might want to spin up at least a little outside work in your field, if that's important to you, as the longer you stay out of work, the harder it might be to re-enter. Five years is already a chunk of time, and ageism does exist. And I would recommend getting your things out of storage so you have more to hold onto for your own retirement and expenses. Think about all the money it's taking to keep them in storage and whether the items are replaceable for the same amount or less. Is there room in your dad's former living space for some of your items? Also, did you keep receipts for your mother's expenses that you paid for out of your funds? Could you be reimbursed from her funds? If your mom ends up needing skilled nursing, her nest egg could drop like a rock.
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You've received such good advice and suggestions, and you have such a positive attitude - it's so refreshing! I want to compliment you on your foresight and planning, and addressing the caregiver burnout before it becomes so dominant in your life that it's literally taken over.

You obviously have a good business sense. I like to use business analogies to help keep issues more toward the logical than emotional side. You're now a "hands-on doer" for your mother; move into the "management" stage as you follow other's advice and contract out some of the in-home help needed. Eventually, you'll segue into the "supervision" and "oversight" role as paid caregivers substitute for the work you've been doing.

Develop a business plan if it helps; that's always worked for me. I also sometimes use a very abbreviated critical path planning network to identify which tasks are critical and which are not. It helps keep me focused.

I appreciate your sharing the details of your situation, your well written history, and your very positive plans for the future, and I wish you success at each step of your journey.
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Yes, caregiver forum is right.

Get the financial angle ironed out so that you are in control and understand it.

Go from there.
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