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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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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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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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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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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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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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Hire or look into HOME INSTEAD they are a wonderful establishment that I have used personally years ago. They are around $20 an hour or more and you must have them at least 5 hours a week or more. They do all kinds of things, but nothing medical. They may be your answer to a very difficult problem.
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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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WOW, these ideas are all beyond fantastic - thank you a million times!! from this alone, i just got a renewed invigoration going forward. i hadnt thought about talking to a $advisor regarding my nest egg, how brilliant to make that the starting place. then that professional guidance will inform my decisions regarding how much i get back to work. (and yes, i pretty much have put the career on hold, but it's a first for me and very uncomfortable LOL.) and as soon as i straighten out mom's so-called bookkeeping (it may as well be a children's picture book, poor thing had no clue), her funds immediately go to the caregivers, which i will also take great care to find and screen and keep the good ones! the clutter is the last priority, though i did dig out some $records when i carved out paths when she was in the hospital, just so we could move around more freely upon her return, which she was not happy about at first, but now she loves having open spaces here again, ha. i will check back often, and have to reiterate my gratitude to this group. (insert tears of joy emoticon here...)
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Try Home Instead or similar contractor a minimum of five hours per day. They can drive her to medical appointments, dress her, bathe her, microwave meals, feed her, etc. You would be spending her teacher, social security, IRA RMD's, etc. It is her assets and should be used for her care if she can live at home. Sell the three story townhouse, and move into a comfortable one level rental, preferably handicapped equipped. Be prepared to transition to seven day care, five hours per day, at home. Then be prepared to transition to ten hours per day, seven days per week at home. Then be prepared to transition to 24-7 nursing home care at a nearby facility. As you can see, eventually she will spend down her assets and the state Medicaid program will pick up the difference between her pension assets and the total cost of care. If this seems complex, consult an elder care attorney for assistance.
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All of the comments, above, are great. There are ways to preserve assets and income and still get her (and you) the care she needs and deserves by tapping into and supplementing Medicaid coverage. Most elder law attorneys will give you a free consultation, but look for one in your state and who has good credentials, especially the National Academy of Elder Law Attorneys (NAELA).
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First, DO NOT spend your savings on Mom's care! Go see an elder law attorney for a consultation. Mom sounds pretty well set up financially, but you never know. You don't want to do anything that you'll regret later.
Find a place for Mom to get some social interaction. Being isolated is the biggest danger to her well being. An adult day program or senior group would give her some friendship and give you some uninterrupted time to get back to your business. If you don't know anything about the programs in your area, check your county's office of services for the aging for a referral. Also, find a good home care agency and book them for their minimum hours per week. They can help with bathing and such and you'll have a relationship with them so that you can call on them when you need overnight or additional care (also look into a simple companion service if your mom doesn't need actual nursing care - it's less expensive).
Talk all this through with your brother. He is no doubt grateful that you are doing the hands-on, but you'll need to keep your relationship strong because his view of things could change on a dime if he develops the sense that Mom's life isn't being well managed. Make sure you and he are on the same page at all times.
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The folks here have it right. You folks saved to take care of themselves...whatever is left over is a gift. you don't owe your brother an inheritance. Your $ should be used to take care of YOU in your old age. Your mother is so fortunate you are looking out for her, and looks as tho you're doing everything you can. But remember you have to look out for you, because no one else will.
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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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answer to your question: you don't. They suck all the life and joy out of you. Only child who cared for divorced (when I was 8 years old) parents. Dad disabled for 3 years before he passed from cancer. Going on 10 years with Mom with AD.
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Um, prepare yourself for a lot of work. A lot of work researching options, managing caregivers, taking care of details. Accept that things will not be perfect. Retain your networks.
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I agree that you totally need to spend her large amount of cash-($300k) on her care. Not yours. Thats what it's for- your dad to take care of her- and if after that there's anything- you boys get that. I rhink you could hire caregivers for at least a few hours a day and get out and work or seek contacts and think in peace.. Sell the house.? And If there's profit in that-- you both could move somewhere where you can buy a house or setup with room for both of you. It's a big world -unless you need to stay in that spot - there are options with that cash she has and a house it seems. But need to tighten up the future plans it seems
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My husband&I are currently looking into other financial avenues to continue taking care of my 91 year old Mom who requires 24/7 care. Mom's only asset is her paid off home. Expenses & care increase as time goes by. Currently, we are leaning towards, adding my name on house title& obtaining a HELOC to continue with full/part time caregivers( she will not qualify on her low income alone).Use her
money to take care of her.
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Your life sounds like mine. I dont have a family because all I did was go to school, work and take care of an elderly loved one whom I lost at a nursing home and who got killed there by neglect, My brother never helped me either. He even has grandchildren. I dont have anyone. I dont regret that I took care of someone I loved so dearly. What I regret is leaving my loved one at a nursing home because I had no experience and I was just going by people's suggestions which seems to be the case here. The safest route for you is to get help at home. NEVER leave anyone at a nursing home or assisted living or whatever. You never know what will happen there and it gets hard to fight those insensitive people there. I plan to get back in the work field and continue my life, as far as seeing my grandchildren, at my age, I doubt it, but I am glad I took care of someone for a long time who was very important to me. I was getting commended everywhere and that is how it should be. In this country most people say they love their parents and grandparents, yet they dump them into nursing homes and other places because there is so much advertisements from there. They make it sound almost normal that you have to dump them there. In other countries ( check them out if you have not or read about them ) the families take care of each other. That is what is missing in the American family !!!!!!!!!!!!!!!!!!!!!!! and scientists in the USA wonder why people in other countries live so long? I tell you even the biggest mind makes stupid mistakes. Scientists in this country have the answer in front of their faces and they dont see it. The answer is in the family, not your doctor or your hospital, or you nursing home or you home assisted living whatever. It is your family. No one will give a crap about your loved one except you and your family. PERIOD.
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Your life sounds like mine. I don't have a family because all I did was go to school, work and take care of an elderly loved one whom I lost at a nursing home and who got killed there by neglect, My brother never helped me either. He even had grandchildren. I don't have anyone. I don't regret that I took care of someone I loved so dearly. What I regret is leaving my loved one at a nursing home because I had no experience with nursing homes and I was just going by people's suggestions which seems to be the case here. It was the biggest mistake that I ever made in my life. The safest route for you is to get help at home. NEVER leave anyone at a nursing home or assisted living or whatever. You never know what will happen there and it gets hard to fight those insensitive people there. I plan to get back in the work field and continue my life, as far as seeing my grandchildren, at my age, I doubt it, but I am glad I took care of someone for a long time who was very important to me. I was getting commended everywhere and that is how it should be. In this country most people say they love their parents and grandparents, yet they dump them into nursing homes and other places because there is so many advertisements and propaganda from them. We have been brainwashed by all these advertisements which is killing the American family. They make it sound almost normal that you have to dump them there. In other countries ( check them out if you have not or read about them ) the families take care of each other. That is what is missing in the American family !!!!!!!!!!!!!!!!!!!!!!! and scientists in the USA wonder why people in other countries live so long? I tell you even the biggest mind makes stupid mistakes. Scientists in this country have the answer in front of their faces and yet they don't see it. The answer is in the family, not your doctor or your hospital, or you nursing home or you home assisted living whatever. It is your family. No one will give a crap about your loved one except you and your own family. No one gives a crap about anyone here except money. That is all they care about. PERIOD.
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SallyDaughter,

Yes, please do keep in touch and let us know how you are doing. We will learn from your experience, too!
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Hi, on the financial side of things, open up a trust and get a few stocks that pay a good dividend return to use that money for the care instead of spending it down. You will not be sorry. Otherwise cash in hand runs out fast. Good luck.
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S.O.S. taking care of both parents and it's overwhelming to work with/through their varied health issues COMPOUNDED by their long standing marital issues, depression, denial and palpable fear of dying. They do not believe in counseling, zero support systems in place and culture of secrecy because "we don't air our dirty laundry". I'm afraid they're going to scare off the part-time paid homemaker we actually have. They do not qualify for Medicaid and can't technically afford an Elder Law Attorney. Sigh. Thanks for listening~
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Great answers. In my opinion, put her in assisted living. You can start with respite care for a weekend so she has time to adjust and eventually move into living there full time. She might come to actually enjoy the social activities. My mom has lived with me in my house for five years. It does not get easier. Prepare now and begin the process of emptying her hoarding stuff. It will be harder after she's gone. I put my moms photos of her life on my computer and made a slide show Set to music. It was therapeutic for me. It is a long goodbye. Grief support may help also.
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Sorry, too many posts to read. There r some very nice AL. Your Mom would have a social outlet. Three balanced meals a day, daytrips, a nice room with her own things. In my area, and I've heard most areas, the AL require 2yrs of private pay. Your Mom seems to have at least that. After 2yrs, if assets re depleted, you can go for Medicaid. With your Moms problems, its only to get worse. At ur age, you need to work. SS only goes back 35yrs to calculate what u receive. That isn't work years but years. I feel what we owe our parents is that they r safe, clean and fed. Not that we give up our lives for them. They need to realize that a time comes when they no longer can take care of themselves and we as children cannot be there 24/7. They had their lives we r entitled to ours. If my Mom had the money, I would have placed her in an AL last year. She seems to be going downhill a little more each month. She just had a fall and I'm waiting for Xray results. If surgery is in our future, I may have to make a decision on longterm nursing care. Mainly because of my house being a 4 floor split level. I have 3 sets of stairs. If she can't walk on her own, no way can I get her out of the house to doctor appts. Ramps don't work with howmy house is built. No matter where she is in the house, she has stairs. I feel bad, but she will have no decision in this.
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Slowly empty out her STASH. A few mags at a time, a folder here, there. Next have all her utilities paid automatically every month. Get a lawyer. If you live in the US, it is VERY important to have her assists protected from MEDICAID..not medicare, MEDICAID. They go back 5 years in assets and will wipe her out in many ways. Can you get a caregiver to spend a couple of hours with her a few days a week?
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Hello, I am also taking care of my father who is 84 with Alz. I work full time and hired a caregiver using to help me and my dad. They prepare breakfast, lunch, give him his medicine, walk him to the bathroom, vacuum, dust, clean dishes and laundry. It is a huge help. It took my dad a little while to get used to her, but he is used to it now. I download utube videos with frank and dean martin and he enjoys listening to the music vs tv which he doesn't really understand. It is a nice alternative to assisted living or memory care unit. thank you for taking care of your mom as I know it is hard work. I also have a brother who told me that he needs to be in a home a year ago, but I just cannot drop him off and drive away. I will continue to take care of my dad for as long as possible.
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Assisted Living - paying 6k per month (med level 3) PLUS additional funds for a personal associate and med-co pays/insurance premiums, "groceries" (LOTS of paper products and pads and Depends are very expensive) plus more. I "visit" do chores 2-3 times weekly. I twist my adult kids arms into going at least one once a week. Six years now in a facility, two years before that trying to do home care until she set the kitchen on fire. It is exhausting and expensive. Somethings gotta give. This is no way for people to live...loved ones or caregivers. I am 57, still working full time and JUST had my first grandchild. It would be nice to enjoy a few years.
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