Follow
Share

My fiancé is a paraplegic, he is wheelchair bound and paralyzed from the waist down, so doing most daily tasks are harder for him, don't get me wrong though, he is hard headed and can do anything he puts his mind to but its hard on him. I am his 24/7 caretaker, and I do not have a job. And with that being said I want to be able to provide more than just assistance for him, I'm not sure how to make money when I have no free time. He does have a job so we have an income but its just barely enough to get by. But, Any and all advice is appreciated, thank you for reading. And I am so sorry if this isn't really the type of post to be posted here I'm just not sure where to get advice.

This question has been closed for answers. Ask a New Question.
Ariel, yours is a hard question to answer without seeming to be unsympathetic, and your situation clearly needs sympathy. I’ll do my best:

1) I’ve known and worked with several guys who were paraplegics, and I’ve never known one who needed 24/7 care. They normally needed help to get up in the morning and go to bed at night. They used a catheter for urine, and managed it themselves. They usually looked for as much independence as possible, certainly not 24/7 care. They would have regarded that as ‘smother love’ that they really really didn’t want.

2) What is your own ability to earn, if you aren’t providing care 24/7? What skills or qualifications do you have to earn your own income, if you aren’t so tied up with care? Long term poverty is not good for any relationship, at least not unless there is a clear way out of it to a better future in the foreseeable future. Ways to earn ‘some money’, like a little pocket money to do a little more, don’t cut the mustard for two or three decades. What is your ‘way out’ of poverty?

I’m sure that you love your fiance, but your love will be under horrible pressure if you don’t think about these things. If you can’t solve the problems, you both may be better getting past your expectations of a long term relationship and marriage. Your love for each other may last better without the pressure of these expectations.

Lots of love, Margaret
Helpful Answer (15)
Report

WOW! You are amazing! If you can get a job you can work at your own hours. My friend does medical billing and she works all the time. She says she sets her own hours and had time to raise her two kids (now in college). Prayers for you caring for someone be it 24/7 or 1 hour not easy.
Helpful Answer (10)
Report
JoAnn29 Sep 2023
Medical billing is a speciality. My niece went to school for it.
(6)
Report
See 2 more replies
I would call your County Disability Dept. Have them evaluate your Fiance to see what he is capable of and how your home can be handicap excessible.. He has upper body strength he can use. If everything is put on his level, he should be able to do for himself. My GF was wheel chair bound. All the food and dishes in her upper cabinets were placed in the lower ones. Call Medicaid and see if he qualifies for in-home help. You need to work just because of ur SS.

Did u see Americas got talent. There was a man born with no legs.
Helpful Answer (7)
Report

I am afraid that I agree with others here that 24/7 are is not needed for an otherwise healthy and determined paraplegic. My own cousin went everywhere by van, held a job and functioned so very well with his wife's minimal help. She also worked. Together they raised three children. I think that you are underestimating both your guy and yourself.

I wish you the best of luck.
Helpful Answer (8)
Report
Sarah3 Sep 2023
I think it depends on each persons individual needs, not all persons who are paraplegic have the same level and type of care needed
(3)
Report
There are far more remote work jobs in the post Covid world than there were just a few years ago. Go on Indeed or Glassdoor and search remote employment positions. Also consider the real possibility that you leaving for a few hours a day for a part time or mixed onsite and from home job could actually improve your relationship. Many relationships are improved by some time apart, pursuing separate goals. Your fiancé will benefit as much as you. You both need to be considering your financial future and more income is a great step in that direction
Helpful Answer (10)
Report

See if IHSS is offered in your area (you can sign up for work as a care giver. I am not sure if you can sign up your husband as a recipient of care for you to be able to work for / with him. You need to discuss with them.

However, you can set up your own hours and they offer benefits although the pay is low. You might be able to offer services such as: cook and do laundry at your place and take over to a recipient.

https://www.cdss.ca.gov/in-home-supportive-services

Read these:

Can I be a caregiver for my partner?

Therefore, they can elect to hire their spouses as personal care providers. Their spouses, if approved, are paid by the state program or through an intermediary agency. Compensation rates vary by program and state. Typically, caregiver spouses are paid between $10.75 – $20.75 / hour.

Read this and research.
https://www.payingforseniorcare.com/paying-spousal-caregivers

Call the IRS, too.

Gena / Touch Matters
Helpful Answer (6)
Report

Before OP’s partner can ‘hire her as a personal care provider’ he would need to be assessed as requiring the care. The paras I have known have normally got care (often about half an hour at a time) from someone working for a government- run (-sanctioned) program. This avoids the problem of minimum hours built into most labor regulations, because the carer has multiple jobs. It would be very hard for OP to set this up.

I think it would be helpful to contact other paras and see how much care they actually need, how their accommodation has been modified to help them care for themselves, and other things that help them to cope – without 24/7 ‘care’.
Helpful Answer (1)
Report

I would consider the possibility of some amount of time doing a remote work from home p/t job, also socially it may be helpful to spend even if it’s just an hour a week having coffee or a meal with a friend or other social connections so that while your providing his care at least your able to have a bit of time doing self care - having coffee w a friend, having a pedicure, treating yourself to something doesn’t need to be costly or time consuming but just a touch so your own cup is filled
Helpful Answer (5)
Report

i Think spouses should be paid for caregiving … I’m in the same position
Helpful Answer (5)
Report
dkiely33 Sep 2023
We don't even know if this is her spouse. She said fiance.
(0)
Report
You can find remote jobs on websites like indeed.com, monster.com, flexjobs.com, etc. that will fit into your caregiving’s schedule. Some of these jobs on these websites are flexible and can work around your schedule with your caregiving duties.

Wishing you best of luck in finding a good work-life balance in your life.
Helpful Answer (5)
Report

OP has not been back to explain why her fiance needs 24/7 care but also has a job, or how she intends to work from home while also providing 24/7 care. Or basically why her fiance needs 24/7 care.
Helpful Answer (4)
Report

I will be blunt here. I think you have lost perspective regarding your situation. I have worked extensively with people living with para and quadraplegia.. With appropriate accommodations and training your partner should be quite independent. I don't know your skills but whatever they are please seek a career for your self. Once you do, you won't look back. I have to wonder if it is you or your partner that has convinced you that you must be on call to meet his needs 24/7. I suggest you read about codependency (Codependent No More is a good one) and see if it sounds like your relationship with your fiance.
Best of luck to you. Please update us on any changes you are able to make.
Helpful Answer (11)
Report

You identify the relationship in two ways " fiance" and " husband". There is a legal difference.
Why do I say this? Not to be disrespectful but rather a wake up call.
He has a job, you say. And, can get in home health care support thru multiple agencies. If he is a veteran, even more support services.

You should put yourself first and get a job that supports you. This will improve your self esteem and, start to address both your financial needs and, to set appropriate boundaries between relationships and, caregiving.

Also, you getting a job will help you look at the question, are you actually using his disability justify you not working? Don't let this be the case.

Get out of the house , get a job that is meaningful for you.
Helpful Answer (12)
Report

I used to work as a software engineer and have had 2 coworkers who were quadriplegics. They both worked full time. One drove himself to and from work. The other took public transportation. They both got around work in a wheelchair and workstations were equipped to accommodate disabilities.

I had these coworkers at different times in my career and worked on a few projects together. They had use of their arms and could type code. There's a designation on where your spine is broken which makes you a quadriplegic rather than complete non-use of arms. I asked because I thought quadriplegic meant being unable to use both arms and legs.

Am not sure why your fiancé stays home and needs 24/7 care. It was not the case with my coworkers.
Helpful Answer (5)
Report

I knew a man who lost the use of his legs and was wheelchair bound. He went trap shooting. He owned a jeep and I watched him get into the jeep, leaving his wheelchair on the ground. He leaned back, opened his back door, was able to collapse the chair and swing it into the back seat. If fiance can use his upper body, hands and arms he can do for himself. It just need to develop his upper body strength.
Helpful Answer (3)
Report
Breezy23 Sep 2023
The poster is asking for suggestions on how SHE might be able to work. Describing another person and that person capabilities doesn't help her in her situation, and every situation is different. Please stick to answering her question.
(3)
Report
Have his Primary Care Doctor write a prescription for him to receive home care. Whichever home care company you all choose to use let them you will be his aide and you need an application to complete their hiring process. The homecare company will hire you to be his aide. You will get paid. It's not much money but it's more than nothing.
Helpful Answer (6)
Report

There should be time while your finace is doing his own work for you to do at least part-time work in your community. It may not be high-paying, but it is more than no job at all and if you do it well and earn a reputation as a good and reliable worker, a first job may lead to a promotion or a referral to something better. Look for aide-level jobs in schools or entry-level jobs in retail. If you have the skills for secretarial or health care work, look for part-time shifts i those areas. Jobs and income are the priotity and other chores and errands just have to be fit in around them.
Helpful Answer (2)
Report

I think you need to think about this in a different way. As you tell us he can be very capable when he sets his mind and he has a job - then he really does not need 24 hours care every day of the week. Set up routines that enable him to manage without you, organize the house/accommodation so he can reach anything he needs.
Then that sets you free from 24 hour care. In the time he looks after himself and the time he is working - this allows you time to work. Many jobs can be done online now. There are many part time jobs out of the house - cleaning for other people is one simple one; looking after holiday or 2nd homes and then the traditional jobs that can be done online as customer service and billing. As others have said - there are also freelance jobs on Upwork or Fiverr and even Craigslist.
It all depends what your own skills are.
My husband has dementia and in the time I don't look after him I have an online Etsy store and a tshirt store that I sell from. If you put your mind to it there are many options. Sit down and make a list.....then start looking.

You need money for yourself and also for your future retirement by paying into the Social Security System.

Get Social services for the disabled involved and Medicaid. Make sure you are not making excused for yourself not to work.

By having work you will bring more to the relationship than money.
Helpful Answer (5)
Report
dkiely33 Sep 2023
Great points. I get the feeling she is over-stating her need to be his caretaker 24/7. It is SO important that she take care of her own financial well-being and have money for her retirement / Social Security. With his disability he must qualify for some free services like a home health aide or visiting nurse or something. It makes me wonder if she wants this to be her main income.
(3)
Report
Contact your local County Services. In your circumstances you may qualify for video training in a job you can do at home. It’s worth checking out. Good luck!
Helpful Answer (3)
Report

You may be able to earn income as your disabled husband's care giver!

There are programs available in all states that help provide for in home care. We have one here called IRIS which helps provides the income needed for care-givers.

Is your husband eligible for medicaid? If so, he would qualify for a program like this that allows him to pick his own care-givers (including family). This may vary from state to state. I have heard some states do not include family members, but it would not hurt to ask.
Helpful Answer (3)
Report

To Breezy: OP is “asking for suggestions on how SHE might be able to work”. Answer: she can go out and find a job.

Her partner’s abilities are the key issue here.
Helpful Answer (3)
Report

ArielGJackson: As your fiancé is able to hold a job, perhaps hs doesn't require 24/7 care, which would free up some time for you to seek employment.
Helpful Answer (7)
Report

You can’t. I have been there. Your only option is to get care for him that would free you up for work. The only problem is there are no programs that provide care all day multiple days a week. They might pay a portion. You would have to determine if what you earn will be more than your portion Of what you have to pay. The most common solution is to get a family member to watch him while you work.
Helpful Answer (1)
Report

How come the people asking the original question here so rarely come back to answer people taking the time to respond to them? I notice that a lot on this website. Are these real people posting?
Helpful Answer (1)
Report
MeDolly Sep 2023
I wonder the same thing, some of these posts are just plain bazaar yet we spend time trying to help them and they never come back or they do 3 years from now, with exactly the same issue, having done nothing that we recommended.
(2)
Report
See 2 more replies
It’s just possible that the posts have prompted a conversation like “These people say you don’t really need so much care”. “I’ve told you that all along, but you’ve insisted, and why should I turn down a 24 hour free maid”. Great outcome! But OP is not likely to come back and tell us.
Helpful Answer (3)
Report

These jobs seem to be flexible:
Uber
Lyft
Instacart
DoorDash
Waitr
GrubHub
perhaps they could be worked around partners schedule
Helpful Answer (0)
Report

Can he get disability? That might help… idk but I do think u are wonderful. I wish u the absolute best!
Helpful Answer (2)
Report

Companies like Data Entry Operators to work from home. They will even set you up with computer and all. Input alpha/ numerical verify address ect.

Forcus Group pays $75.00 up Virtual & in person trying products then. Write positive / negative results. Varies items or topic you select.

Don't you pay them anything they pay you. Also stuffing envelopes they provide all items/ materials

Good investment you even select how you prefer to be paid PayPal
Helpful Answer (0)
Report

You did not state your fiancés' age if he is a veteran or nor do we know the state you live in. You did state he has a job. However, over the last few years through advocacy, the federal, state, and local governments have implemented a few Family Caregiver payment programs. Call your local Area Agency on Aging for further details. If your loved one is a veteran, there is the Program of Comprehensive Assistance for Family Caregivers (PCAFC) offered by the Veterans Affairs. Call your local aging and disability offices.
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter