I've recently beeen diagnosed as quadriplegic. I have never married or had kids. My siblings (5) live with me. They live rent free. I ask them in exchange, wash me, feed me, give me my meds and get me in and out of bed into my power chair. They tell me "No."
I have to pay my niece $20 an hour to help me. She comes in the morning, washes me, feeds me, gives me my meds and gets me out of bed in one hour. She comes back around 5:00pm and changes me, feeds me and gives me my night meds because no one else will. In between the times she comes I sit in my chair and watch TV. I get nothing to eat or drink. When I ask, I'm told "No. I'm watching TV. " "No, I'm try no to figure out why my remote won't work." "After I clean my room."
" Why do you bother me in the morning." " No, my fingers need a break. " " I'll feed you but I won't give you any meds or tea." " I'll feed you today, but don't bother me tomorrow."
I want to put them out, but I can't be alone as I can't do anything for myself.
Am I wrong in asking for their help in exchange for free room and board?
I am the youngest at 54. They are either 60 or approaching 60. I realize changing me and getting me out of bed might be a bit much for their age. I am not small any more. My meds have made me heavy (approaching 200lbs).
I've asked in exchange for changing me and getting me out of bed (hoyer lift) give me $200 a month to help with finances. We are living off of my 401k (which is dwindling) and I pay for everything.
You definitely aren't happy with the situation as it now stands. And everyone is living off of YOUR 401(k), and that isn't right at all. Once all of that money is gone, then what?
Please think not in the present but in the future.
And as far as my niece is concerned, I am not upset with her. She is a godsend to me!! She has her children and grandchildren to care for plus me. I just wish I could pay her more.
I understand you wanting to help your disabled siblings too, but rent free isn't really helping. When your money runs out, where are they going to be able to live rent free? Everyone in the household needs to contribute, either with household and care chores or with some money - there needs to be a household budget that works with the (combined) monthly income and not by hitting the 401k every month. The 401k should be reserved for non-monthly expenses like a new wheelchair or a hot water heater or a roof when needed.
Your brother and RA sister should be able to at least bring meals and do other small tasks for you even if they cannot perform many personal care tasks. They should be doing these things more or less on a schedule. I care for my mother and she does not ask for her meals, I "serve" her meals at appropriate times, check to make sure she always has a drink within reach, offer coffee refills, make sure she has newspapers and books, turn on the TV and find a show she likes, etc. When she was bed bound after a fall, I changed her incontinence panty at least every two hours. You need that too or you will have problems with skin breakdowns and UTIs.
On you are Medicare yet? Medicare provides bathing assistance twice a week. I think Medicare also provides some additional hours of hands on care and housekeeping too. A friend with ALS got a daily care attendant with progressively more hours as his capabilities declined. I would think your quad diagnosis would qualify you for an attendant at least 8 hours a day; maybe your doctor's office could help you with this. You need to contact your Area Agency/Council on Aging and get a needs assessment of yourself and your disabled siblings. If your siblings are not "officially" disabled, now's the time to see about getting that official label so they qualify for Medicare after two years. Let the AAA social worker help identify and get started all the community services you and your siblings need.
You do not need to break up your home with your siblings if a sustainable plan with everyone contributing can be worked out. If you don't work out a sustainable plan, then your household will be broken up at some point when your money runs out.
However, have said all this...everything in life is negotiable (except taxes and death) this means you can find a middle ground. But if they refuse to work with you then they need to go! And you need to find someone else to help you.
About the sister who helps some of the time but complains just tell her she can move out or start to pay rent. I have a feeling she will start helping you and stop complaining.
I nor can anyone eles here tell you what is right for you. I am just trying to give you another way at looking at your situation. You have received some good advice here and I would look into what services you can get. Can't hurt!
You shouldn't have to sit in soiled clothes or beg for help as someone posted here. You have the right to be clean, fed, water, safe, and just cared for as all humans do.
If you like your niece then keep her, which I feel you do. As long as she is doing right by you!
Some times in life we just have to cut people out of our lives and yes it sucks and it hurts, but like I always say, "when it come down to me and someone eles, I pick me." Just make sure you have someone to take the place of your sibs to be there for you in case your sibs decide to move out. Get your ducks in a row...come up with a plan.
I am truly sorry about your situation.
Just my 2 cents!!!
I just feel I shouldn't have to pay someone to help me if you live here. Am I being selfish just thinking about myself?
I realize that they have issues of their own and may not be able to help physically, but what about financially.
It sounds as if you are really only angry with one sibling.
I am curious as to why 6 elderly(?) siblings are all living together. Just curious, no judgment.
Maybe you need to have an all hands meeting and lay out the plan. It sounds a but unorganized to me, and maybe if you had a talk and put pencil to paper and worked towards a community based help, you would get better care, as everyone would know what their responsibility is.
Everyone lives with you? Rent free? I hope not. You do need a lot of care, and between the 5 of them, it shouldn't be a burden for any one of them.
One sister won't bathe you. OK, don't ask her to do that. You probably only need 3 showers/baths per week. Let someone else take that job. Actually, with all these adults in the house, each person could take ONE day and then be 'off' the rest.
If your sibs cannot/will not help, you have options to move--not necessarily to a facility that would take all your money, but to a place that would give you care and dignity, which it seems you are sadly lacking right now.
Come back with more on point answers. I just get the feeling you are mad at one sister.
Quite frankly you might be right. By the way it is four ,(4) siblings. One brother who is a little mentally challenged after a beating. One sister who also has RA (can't help herself let alone me) and the other sisters. I think maybe I am being selfish. The one sister who said those things does cook for me and she does feed me, she just doesn't like to. I feel that I shouldn't have to pay my niece since they live here and can give me my meds and meals. I do understand about the bathing as I have gained weight. (,, approaching 200 lbs). If you are physically unable to help, help financially.
Are you able to engage a lawyer to look into the best living situation for you?
Would you be better off living in income-based supportive housing and hiring aides to care for you?
I think I made it sound worse than it is. I'm not starving. I get fed. It's just having to get someone to feed me. It's embarrassing to have to go around asking for something to eat. By the way, only one sister said all that and she actually cooks for me and will feed me. She just doesn't like to feed or bathe me.
By the way, only one sister said all that. The other will get up and help. She fusses and gets mad, but she gets up.
I hope that you receive the care you deserve. No one should be left in soiled clothes for hours and have to beg for the basic necessities in life, such as food and water. Do not spend down your 401K on your siblings as this may result in complications in qualifying for Medicaid benefits.
Take care of yourself.
May I ask what started each of the 5 siblings to move in with you? What about their spouses? Just seems strange that 5 siblings would be doing this. I assume most are working, correct? If not, why not? It is not unusual in today's world for seniors who are mobile to still have full-time or part-time jobs being in their 70's.
Are any of the siblings helping you pay for their fare share of the electric, water, heat/air conditioning? I can't imagine how often your washer and dryer are being used.
I realize you don't feel comfortable telling them it is time to pay rent since they are not helping you out. And time to fire the niece. You could easily get a reliable and helpful person more than happy to make $20/hour to help you during the day.
Since your siblings are eating away at YOUR 401(k) which means you earned every penny that is in that account, you may want to sit down with a financial manager or Elder Law Attorney to see what would be the next route to take.
Downsizing is a given here. Tell your siblings it may be time for your to sell the house. That will get your siblings attention. Just tell them you can no longer afford to live in the house with the cost of the mortgage, utilities, property taxes, homeowner's insurance, routine cost of repairs and maintenance.
Even if your siblings surprisingly started to pay some rent and chipped in for utilities, you still need to have someone to help you with your daily needs. Check around at the Assisted Living facilities in your area to see about cost. Assisted Living aren't just for the elderly, I have seen young people in their 40's there due to mobility issues. No more worry about housekeeping, laundry, or meals.
All food for thought.
My niece, no I would never fire her. She is a godsend!! $20 is cheap. Just wish I could pay her more.