Mom asked me to move in to provide care 2 yrs. ago, new state. She’s 87, barely able to walk, hearing impaired, but pretty sharp. I love my mom, she’s quite a lovely person, tho she’s very materialistic and slightly narcissistic. I’m the opposite and tend to deny my needs for someone else’s benefit because I believe(d) in it. I’m the one kid who isn’t married, so I felt it was my duty to care for her.
In these two years, I have had little help from siblings (emotional support would help). I don’t know anyone here, so have no local support. I am now on Medicare but have no other medical supplements & worry about what will become of me after mom passes (not once has she mentioned my future, and that hurts me). It seems it’s all about her. That’s not the mom I knew.
I am feeling used, taken advantage of, and like I’m a servant, not a daughter. My usual optimism and loving kindness are fading, and I don’t like that. I don’t know who I am anymore. I’m afraid of my future and can see nothing to look forward to unless I take some action. I asked mom last year to pay me something. She was upset, but finally said she’d give me $500/mo. I was shocked at how little she valued my services 24/7.
I’ve read posts stating that $15-$20/hr. is fair compared to agency rates. I also read one post stating a flat rate of $75/night is charged for the entire night.
What I’m thinking is that I should get the figures & facts ready for mom, then make a case. If she won’t hear it, I may have to find a job elsewhere. She can afford it, she just doesn’t wish to part with her money.
And, for once, I need to know I tried, so I don’t regret it.
I have a background in physical medicine & rehab, have cared for others most of my adult life and have considerable knowledge to help my mother, such as, interpreting medical reports/drugs, problem-solving.
I’m handy around the house, am a good cook, making her terrific meals she enjoys and raves about, I care for the house, laundry, etc. I don’t think a random agency aide could come close to the care I provide my mom.
I’m burning out with resentments and with the unconcern for ME, too! I keep trying to manage it, but I can’t any longer. Before I make a rash decision, I would be most grateful to hear your thoughts, especially, on what rate Upper Michigan caregivers are paid, and a little cheerleading on taking charge!
I am a newby to this site, but have benefitted so very much from all of your posts. Thank you.
Caregiving is REALLY hard work esp for parents. Lots of issues come up from childhood not only with parents but with siblings......I was caring for both my parents for the last 6 yrs, after I was laid off from fulltime work(I opted to go back to work PT and make very little money but have had great jobs and have good savings, etc). My caregiving is categorized as PT ie was doing all insurance, all medical appts, all transport and medication management. My father passed last summer and now its just mom but she became much more helpless after dads death and has Congestive heart failure, diabetes, depression, anxiety etc.....she is 87 and dad died at 89.. When they were both alive , I would spend 4 nights per week with them and my brother would do the other 3 nights. Since dad got sick and then died(since June 2018), im here 6 nights per week and the commuting back and forth to manhattan(3.5 hours per day) for work is really tiring esp since my apt is a 10 min walk to work!. My brother has a really great, demanding job - works 60 hr weeks, gets paid really well and travels internationally for work. I told him that I would care for both parents(and now mom) and would tell him when I couldn't anymore.....well, mom still cooks and does laundry for herself, bathes herself, dresses herself, et but everything else I do......mentioned above.....my life has been ON HOLD for the last 6 yrs and def during the last yr, since my apt in NYC sits empty......I don't think I could ever ask to get paid for what I do - but everyone is different...my brother and I will inherit house and some savings and it will be divided equally. Its not ideal, since im grieving dad, caring for mom, working/commuting and some days don't feel well myself....im angry/jealous some days ie brother doesn't have to deal with this and is able to continue making lots of money.....mom and I bicker more ie we have rediscovered ourselves in a very different light...….there are days I want to stay in my apt but I cant leave her home alone late afternoon/night - she becomes depressed/anxious et.c…..she also has a ton of dr appts since dad died......its not one size fits all......If your mom is paying room and board and $500 on top of that - how much more would you need to feel financially secure? Also, if you weren't caring for mom - would you work outside of the home?
First, get a valid value for your room & board to add into the calculation.
Second, get it in writing! That way you have proof this money was not a gift or giving you your share of her inheritance early.
You may think she will never qualify for Medicaid but I know a lot of people who outlived their money, or major surgery and ICU suddenly ate it up.
Third: Make sure there is a lease portion in the contract. I know caretakers who were locked out by Estate Lawyers & siblings days after LO passed.
Fourth: Contact all agency I. Aging & United Way referrals to get respite help.
Parenting was 24/7 when women didn't work outside the home. Back then neighbors and family helped. Kids get potty trained and learn to make cereal and sandwiches. Parents are much bigger and don't gain skills with time. So research additional help and get it. If she won't pay you may need to leave her alone or hire a teen or college student to sit while you shop, go to a support group, or an hour at an affordable gym...or just walk to the park.
She needs to experience this. When you go shopping or see your doctor, etc..she thinks you are having fun and neglecting her.
Also check into long term care insurance and insist she gets it. Help her set it on auto pay from her bank.
Good Luck.
My concern for you, is being that your mother is acting in a highly narcissistic manner, and may be a full blown narcissist, it is highly possible that she will gladly let you do all the caregiving for free, and then cut you out of the will to boot, in the end.
Narcissists are famous for changing their will at the last minute. Her reason for cutting you out of the will may well be that you have no children.......or worse, she will spin some story that you did not take very good care of her as her caregiver.
Tell your mother that you need to get a job to supplement your income. Then walk out.
Startabart, walk out and the sooner the better. Don't feel guilty. You have done this for two years with no help and no emotional support. She may end up burying you.
I would absolutely not count on getting a dime from this woman. The other sibs will get it. I've seem this happen twice now and it makes me mad just to read your story.
Go to the office of the elderly in your town and see if they can advise you on how you can support yourself once on your own.
When it came time she could no longer take care of her mom, we all together decided to put her in a home where she would be well taken care of by the health care personal. My suggestion to you would be, that if you are starting to wear out because of all the kaos in your family and them not wanting to support you on this, tell your mom firmly but respectfully that you can no longer live the way you have been and you need to start living your own life, but you will be there if she should need you or to come and visit her. Don't let her guilt bully you, but tell her that she will be paying for her health care because you will not do it for nothing anymore. When it comes to narcissistic people you have to hold your own or they will stomp all over you. I know as I have family like that myself.
Tell her you love her and then give her a list of people she can call for help starting with her own selfish kids!! Let her know you will help out till she gets someone but make sure she is doing it so you aren't being taken advantage of anymore then you have to.
Also I think it would be good for you to get some therapy so you can talk to a professional about the problems you have had. After that make yourself happy and do things for you!!
No one asks for POA, not if they know the amount of work involved in being in charge of it. Often, the person that bestows this job upon you has no idea the amount of constant on call 24/7 type servitude and worrying that the POA is put under.
As an example, during a heatwave, last July, power went out in a huge area near where my father lives. I had to move him in with me until it was fixed with the utility company. Complete emergency call.
Another example was the Woolsey Fire in CA... in Nov 2018. I had to gather my fathers valuables and get him out of his house for a few days, until the area burned clear through during exceedingly high winds.
The responsibility never ends, and nobody works for free, family or not. A contractor friend of mine, when approached for bidding by friends and family, charges double. Says it just never works out for him to make enough profit or make ends meet, when there is other work out there he bids on that do make him money. Have to remain competitive and look at what your best foregone alternative is for making income. Economics 101.
It's great if you can afford to give to your family charitably, but most of us can not or will not put ourselves in that thankless position. Especially if the person you are taking care of is narcissistic, selfish, thoughtless, and only used to taking care of themselves, to the exclusion of the rest of their family. Such as my father. Saying Thank you all the time isn't enough incentive, to do the job.
Find a job (hopefully something you like) if that is what you need to do and tell your mother that home health care will come in and take care of her during the day which she will have to pay for or she can go to adult day care everyday which she will have to pay for too. Also, tell her that you that someone will come in once a week to clean the house and yardwork which she will have to pay for also. Tell her that you will be there in the evenings and fix dinner, and that you will do laundry, but that is all that you are going to do. Also, tell her that you will be taking 2 weeks (whatever the amount) vacation every year and home health care will be coming in 24/7 for which she will pay for. The vacation you need to do even if you are taking care of her. If she doesn't want to do that then she can pay you to do all of these things. I would have home care come in just so your mother can hear for herself what they do, but the main thing is the cost. You will need to have a contract drawn up of what duties you will do, what you will be paid and raises and because you will have pay taxes and taxes would need to be withheld, so it is all legal. Check out online elder services in your area, they may be able to help with legal, such as contract and how to do the taxes.
Another thing take her to visit a assisted/care center where she has someone to help her 24/7, she will have her own room, have activities where she can meet other people, and a beauty salon. She can bring her own furniture, mini fridge, TV just about whatever she would like to make her comfortable. She may decide that she would like that. Many of these places are like having their own apartment. My mom is in a memory care center and she has her own room and it is like a mini apartment. As they get older they don't need as much room.
When my mother was mid stage of Alzheimer's and she wanted to stay home. I had just lost my job and my brother offered me $3,000 a month to care for my mother. I lived 700 miles away, but thought I should try it first before making any decision. After one month I was exhausted, missed my family and as much as I love my mom I knew that I couldn't do it. I was already extremely tired, miserable and my health isn't very good (heart issues) and I really couldn't take the stress. My mom loved to walk and it didn't matter time of day she would walk out the door, so I was on guard 24 hrs a day. I knew if I stayed I would have to put something on all doors so she couldn't just walk out. She would decide to cook and leave pans on stove with the stove on. She would hide things that were important and I spent a lot of time looking for them. She wanted to do the laundry and put almost a whole container of soap in one wash, she had a dog and kept feeding the dog anything in the house all day, because she didn't remember she just fed him an hour earlier, (dog was sick a lot and I was cleaning up vomit and diarrhea) and the list goes on and on. When I would tell her that she just fed the dog, she would get mad at me and tell me "it's my dog, don't tell me what I can't do). Not only my mother issues, but my husband and daughter didn't want to move, which made it a lot harder. He had a part time job that he didn't want to quit, plus my daughter had a job. When I returned home the next day I had to go to the ER, I thought I was having a heart attack (had one before) and it wasn't a heat attack but was stress related. I definitely knew I couldn't take care of my mother. My brother who lived locally took care of her for a year, by staying with her at night (he worked) and weekends. It was hard on him also, because he had a family too. We found a lady that would stay 2 days and had home health care come in 3 days at week. My brother was so burnt out, that he seemed like a different person and so unhappy. We decided to put her into a memory center. She adjusted very well.
Factor in living costs (assuming mom pays all costs) - you save on rent, utilities, maybe food - those DO add up. Calculate the cost to live on your own - can you afford that? Being on Medicare - you are over 65? How many good paying jobs are out there? Even caring for others, the going rate might be 20-25/hr, but that’s the agency fee - caregivers don't get that. 40h/week might be as low as 6-700/week.
Also, while you are "on call" 24/7, her care shouldn't take 24 hr/day (given info provided.) Clearly there are other duties (cleaning, cooking, etc.) Rates DO go up nights and weekends for hired help, but that is a shift differential, like companies might pay 2nd or 3rd shifts.
Although you feel it is your "duty" to care for her, that should not make you a slave. You are entitled to time to nurture yourself. I would suggest you focus on the $100/day insurance - are there limits besides the $100/day, such as a max amount? If not, that gets you up to 4 hours/day of "freedom". If she is so "into" keeping her assets, this is paid for/wouldn't take anything away from her.
Help from siblings? Don't hold your breath. You can ask, but if you're rebuffed, let it go. Focusing on it or continuing to push will only frustrate you and build up your anger. This affects you negatively and does nothing to them.
Your future - mom isn't focused on your future, only her here and now. You won't change her mindset, but you can change your own. You indicate no "medical supplements" - why haven't you gotten supplemental insurance? There are many and they're not expensive (compared to buying private non-Medicare insurance. My retirement 'plan' cost almost 12k/year and provided nothing - not that I needed much, but it only covered my "physical" that year.) The current supplemental plan coordinates with Medicare and is only about $80/m.
"I am feeling used, taken advantage of, and like I’m a servant, not a daughter." This is where everyone suggests boundaries. Sit down and determine how YOU want to spend your day. Factor in some 'me' time, even if it is just to take a walk. It would be good for you to get out and join other activities and perhaps make some new friends as well. YOU have to focus on the concern for you.
"She was upset, but finally said she’d give me $500/mo. I was shocked at how little she valued my services 24/7." Many seniors are out of touch with costs. At my very first job as a grocery cashier I would hear older women complain about the cost of milk!
"I might ask/tell mom that we should get started on the insurance thing and get some aides in here so I can get a break. She won’t like it." TELL not ask. Like it or not.
It’s best not to count on inheritance. She could outlive you. She could leave it to others, fair or not. Increased needs could suck it away. Unless she has a lot, that could be gone in a heartbeat (MC costs here are about 95k. Our mom/dad saved. With the sale of the condo/good management {thanks ME}, she will have enough to cover many years - almost 96 now.)
Ensure you have a legit care-giver agreement. If mom's care needs increase and assets get used up, Medicaid will be possible, but her paying you will be considered a gift unless you have a good agreement. That applies to the suggestion that the government allows up to $15k as a gift to anyone, tax free. This WILL count against the Medicaid gifting.
If she has assets, she won't qualify. While I don't know all the rules, Medicare sometimes provides help, but it has to be for personal care. When hiring an agency, they mentioned this, but mom was still self-caring and refused any personal care (think bathing.) Check https://www.medicare.gov/coverage/home-health-services and if you end up hiring an agency, ask about this - they likely know the details.
You also need to make an appointment with Elder Attorney. If you cannot afford one, Legal Aide Services may help.
One thing for sure is you’re not alone!!! You’ll find same story repeated over ‘ over on this site...
Help is there if you seek it.
Even getting out to work part time a couple days a week will help you. & Hire someone or have dr give order for home health Aide. Inquire about a dr who makes house calls in your area.
Do think of yourself as you are just as important...if you don’t take care of yourself, you’ll be dead first.
Last week, my mother had stomach virus...& I usually go to work per diem the days her private aide is w mom...this week, I caught mother’s virus & did nothing but go to toilet 🚽....Aide was with her & did everything so I can rest, go to toilet ...I cannot imagine having to take care of mother feeling lousy & not being able to do anything for her...
My mother is 92, dementia, & not able to walk. We use stand assist lift & she has recliner wheelchair ..We have staircases but have stairlift..Aide does manual transfer from wheelchair to stairlift because space too small for machine. We take her out sparingly to beauty salon & park on nice days only when Aide is here. Mother was in SNF for 10 months when she fell in between 2 aides ..fractured her “good” leg & needed emergency surgery next day. From hospital, she went to rehab...didn’t progress so Medicare stopped paying...private paying for a while...took her home against advice of Nurses, CNAS & Social Worker at SNF...that dementia gets much worse...which it does...she can get combative, cursing & violent it threatens violence.
Like an invasion of the evil body snatchers.
Another option is for her to go to SNF or ALF .
She should get an assessment by Nurse which can be used for nursing home placement.
On a side note, I have 2 Masters Degrees & have CPA & Teaching licenses!!! I should have an excellent 6 figure job, but I’m doing this for $0 pay!!
Let us us know what you decide as we care even though it seems like no one does....HUGS 🤗
$20 an hour. Hand deliver to Your Moms Lawyer Who would be duty bound to pay out all of Your Mothers costs before the Beneficiaries receive one cent.
Bottom line, please don't bet your hat and don't wait to get repaid from the proceeds of a will, the house has no more equity and she had taken a reverse loan. So, I may have a place to stay for 6 months until the bank tosses me out, and nothing to pay the bills with. Believe me I'm looking for a job and an apartment, and will worry about her care after I have covered my own a**. I hope for your own sake too that you do not assume to get any money after the fact.
Blessings,
D
Might not be a bad idea to get at least a part time job just to get out and away from her and have contact with other people, get to know your community.
I do know how difficult it is to provide 24/7 Care for three years with no break and no offer from Family to
cover while You take a short week end break.
For the first time in my Life I find myself hoping that I do not grow into old age and that the Angels will take me before the winter of my Life begins, because I find the pitfalls that lay ahead of Us as old age creeps upon Us very scary.
Peace to You DonnalJones and Your Mom.
My guess is your Mom will get scared and agree to your terms. If she doesn't then leave and let her hire someone else so you can use your skills elsewhere.
Good luck!
Jenna
Just tell her, if she cannot agree to pay you for caring for her, you are going to have to find a job, period. Sorry if that sounds harsh.
This is happened to a friend of mine that was actually a home health care aide. She went out if state to care for her mother 24/7. She has a sister tgat was no help. She also had her own bills that needed to be paid. Her mother and sister took offense and refused. She and her mother had had a rocky relationship for years but she stepped up. When her mother passed, she left everything to her other daughter who refused to help my friend out.
I wish you luck resolving this.
I do agree you should be getting paid to look after your mum etc. I would calculate how much all the things you are doing would cost if an outsider were doing it. Also check cost for asssited living and residential care. If shes not prepared to pay you proper money for you are doing explain to her you need to have an income coming in for your future. Have it all broken down what costs would be for. If your mums not having any of it tell her she need to approach your siblings to see will some of them take over.
I know you love your mum and want the best for her but, as you say you have to think of your future. Good luck with whatever you decide.
Only thing i would say is make sure you have no regrets in what you decide to do. As my mum died last year at 89 and i miss her dearly. I have no regrets thankfully but, some of my family should 😦
I thought it would all work out, but I could not have been more wrong! I got almost no help whatsoever from siblings who were plenty critical of everything I did and didn't do! Even one that worked in a nursing home for god's sake.
I couldn't visit my own long-term boyfriend in another state (where I was living before I went back to help my mother) because neither one of them would come and give me much of any relief.
Get paid, take care of yourself no matter what. I don't mean that placating comment "take care yourself" that you hear from everybody. I mean get contracts, get paid, put money aside, this is a job! I could not be more adamant about this. I learned the hard way.
I am financially, physically and mentally ruined and turns out my mother had enough money to be fine. I lost what little savings I had, my business and my job. The only person that helped me was my boyfriend from a distance because we were each taking care of an entire house, yard, our businesses and others at the same time. I finally got out but it had to be pretty much an ultimatum and now they're dragging me through the mud. "The house was dirty." Yes, the house was a little dirty, I was trying to keep my mother in the house, not beating me up, not beating up the caregiver, not screaming all the time, eating etc., etc., etc., but I'm the bad guy!!
I didn't know my mother had funds because it was all secret, and I was doing many things professionals should have been hired to do. Everything and anything everywhere to save my mother every dime possible.
Now I am destitute. I've ruined my Social Security future. I've ruined my life.
People who should help you, could help you and know better will leave you to die, and I almost did. I'm in my late 50s and I'm ruined. I'll have to work till I'm dead. I'll be living under a bridge because I have nothing left except for what someone else is helping me with.
If you had read this to me several years ago I would've said it was pure drama and exaggeration. That's not true, this is just the tip of the iceberg! It ended several months ago and I can barely talk about it. I still end up crying, shaking, terrified, and with anxiety attacks while I am trying to put some semblance of a life together. Everything in my life is such a mess that it's not like oh the switch turned on and everything is back to normal. I guess I thought for some reason that would be the case because I was just so desperate to get out, but everything needs putting back together from pieces of me and my life strewn everywhere.
I've written more than enough here, and likely far more than you wanted to hear, and I have to try to get some things done today but I try sometimes to talk about it to see if I can move on in my life, but it's far more slow and difficult than I expected, if even possible.
My thoughts and heart go out to you, my internet connection. I can't tell you how much your story is true to my situation. People on the outside have no clue the amount of energy, money, and time goes into doing this this job for a parent. Sometimes it is compared to being a stay at home mom, but the comparison is simply wrong. (except maybe the part that Moms at home don't "do" anything, so they should be able to take on all these other tasks for the family) Imagine the difference of changing a 2 year old dirty diaper and an 87 year old.
I am SO sorry you learned too late that you HAVE to change things before your own life is ruined. It has been 6 years that my two brothers said, "You are certifiably mentally ill and Mom is 90, so we have to take over financially, physically, and emotionally." Once I heard that sentence, I got myself a lawyer. Thank God Mom had already seen how things could get with them, and got her own lawyer. How stupid/silly I thought she was being........"Mom. These are your own sons! You don't need to spend thousands of dollars on a lawyer!" It is like she had a crystal ball into her future and what her own wants/needs would be. The arguments on the phone were beyond unreasonable. I know you don't think you can afford to get a lawyer. There are elder lawyers that will help you at a small cost to you. Even if you have to put their fee on a credit card, it is worth it. I may be talking to others with this post since you believe it is too late for you. I guess what gift you are giving is telling your story and maybe helping others that are saying....."This won't happen to me" "I don't have to worry." "My family will take care of me for all I am doing." IT ALL NEEDS TO BE IN A CONTRACT!! It needs to be written down to be official.
Once again, Joanne, my heart goes out to do with your situation. God bless and prayers that things will somehow work out better for you in the next year and the years after.
PS Maybe if you make sure the relationship that is long distance is 100% tended to over the next months it can be your saving grace in the future to start a new life.
others are
but, they won’t. They’ll immediately place her into AL. She doesn’t want that. I have a feeling mom will live for 10 more years. I don’t think i’ll Live that long. These are the last years of MY life, too. I’d like some peace.
Most likely if you tell Mom you need to get a job and cant be there all the time she will probably threaten or actually force you out. Your in a tough spot.
You have to act like your Mother.. Put YOUR needs first. As you stated she has the financial resources to take care of herself. You probably need to force that. as we are getting older I am hearing this story like yours all the time. With our parents living longer and longer this makes ANY commitment we make to help a parent possibly a very long task. Bottom line you have to stop being weak about this and stand up for yourself. That may include walking away from your Mom. Most likely like my Mother in law she knows you wont so she is just running all over you. If your not willing to stand up for yourself then you have to accept responsibility for the consequences. As my adult children tell their Mother when she complains about her Mother "Mom you brought this upon yourself, you have no one to blame but you" I will tell you the lesson learned as I have told my children. Under NO circumstances are they obligated to take care of us "no matter what". Best of success.
Good Luck....
I am my mothers health care care proxy and I always promised her she could remain at home. But I will have to change all that if she needs 24/7 care. Hospice doesn’t do 24/7 care here and I would be expected to stay with her and help her when they are not here. That is too much for me. I’m wiped out.
People as they Grow Older, Get Bolder and More TIGHT...I found this Out with my own SAD DAD.xx
Oh Honey, there is no "slightly narcissistic"..... there just may be better days sometime (hopefully), but it ALWAYS is about them. And they have not a clue about current costs/pay..... their minds are set in the past, and that $500 in her mind is probably a huge payment. That being said, my thought would be to get those figures in order (you can call a local home health agency enquiring that you are thinking of getting help for your mom and what would the rate be). Then can you possibly talk your mom into going to an elder attorney (maybe say, Mom, just to make sure your living will, etc. are current, ... etc. ... and then when you are there "innocently" bring up the subject of a caregiver agreement and get the atty input.
Others on here may have better ideas, but I will be happy to give you encouragement... you and I are the same age, only my mother is a few years older than yours and lives with me. Good luck to you, and you are right .... this is a wonderful support group on here.... keep coming back!