How to balance caregiving and working full time?

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I must work full time. My husband is both disabled and on hospice care. He is frequently irritable, understandably. We have no family here. He is 65 and on Medicare. It is me, myself, and I caring for him. My brother is here until June 24th, when he will return to the Seattle area, and I will once again be on my own. We qualify for exactly nothing because of my job. I have 6 vacation days left this year. As he weakens, especially once my brother is gone, he will be alone all day, and I am gone 12 hours per day. That scares me. In the night if he needs someone, it is me, so my sleep is frequently interrupted, and as it is, even when not interrupted, I sleep with one ear open, so to speak, so I am beyond tired most of the time. I am not doing anything well. I am exhausted and do not know where to turn. Yes, he has a social worker assigned, but as we don't qualify for any assistance, her hands are tied. My work performance is suffering, and at home I have little time to do anything but dishes and laundry. I garden out of necessity, but it is also my peaceful place that is also my therapy for keeping my sanity. I don't know what to do. He is weakening, but he is fighting with all that is in him to live. Our daughter lives here (Chicago, IL), but she is a single mom with two children, a job, a mortgage and an AirB&B. She helps as much as she possibly can, given her own living circumstances.

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Top Answer
cccquilter..
As most of us here know being a Caregiver IS a full time job.
Many companies will now allow Family Medical Leave for something like this but that does not pay the bills!
Is your Husband a Veteran? If so he may qualify for some services through the VA. Contact a VA commissions office and see if he would qualify, or contact the VA.
Have you contacted Senior Services in your area to see if they could help?
Are you a member of a Church or other place of Worship? Many will have volunteer programs that might help you out with a bit of Respite so you can get some things done.
Have you talked with the Social Worker from Hospice to see if she/he can help getting a volunteer in to help you as well.
Have you thought about hiring a caregiver that will come in while you are at work? I got 2 great ones through the local Community College. They had just passed their CNA class and when I emailed the College the Director of Nursing responded and said she would give 3 or 4 students my info. They were the best caregivers that I had had over the past 4 years. (Sorry I did not try this approach sooner)

Believe it or not there are people out there that want to help...we as Caregivers/ Spouses/ Parents/ Family just have to find them.
Oh, I feel your pain. I worked full time and cared for my Dad myself, and had no other family.

It sounds like you already investigated long term care facilities, available government benefits and programs. There, I would say consider getting a 2nd opinion from a different eldercare expert in your area.

Here's what I ultimately did: I creatively evaluated every expense and asset I had which could pay for an aide. Everything open for reassessment. Can I change my job? Streamline expenses? Can I sell something? My biggest asset was equity in my house. I initially took a home equity loan to help pay for the aide, but ultimately I sold my house and put down less money on a different house. Still one payment, but now I had cash on hand for the aide.

Thinking outside the box...it sounds like your daughter has a lot on her plate too. Would you/she ever consider living together? It would reduce expenses for both of you and perhaps help you both out. Just a thought.

Could he possibly be moved to a hospice house? Medicare does not pay the "rent" part of that arrangement but there are often scholarships available. You would have peace of mind knowing that he was not alone for long periods, and you could visit as often and long as you want to.

My heart goes out to you. None of this is your fault! The way we handle health care in the US is a disgrace!
Call your Area Care on Aging (not sure if that is that is correct name) but in Florida it is Family and Children's Services. I believe your husband can qualify for Medicaid as long as HIS income is not more than $2,000 per month. You are considered the community wife and allowed a certain amount. In Florida it is $117,000. They cannot put you in poverty because he is sick. My husband has alz. and he receives Medicaid. I work full time so I know how hard it is. Since he got Medicaid he goes to day care three times a week, has an aid twice a week. I get 11 hours a week for respite, aid comes to the house and I can go out and do whatever I want to. He gets Depends free, Glycerna free, medication free because his income is less than $2,000. If your assets together is more than $2,000 put everything in your name. You are allowed to own a home and one car without being disqualified. Don't know why your social worker does not tell you about this. Also contact your HR department about FMLA. I know some companies like mine pay me for it. I am also on Intermittent FMLA which means I can take time off to take him to doctor appt. and stay home with him if he is not feeling well without losing my job. Hope this helps. I am praying for you. I know how hard it is.
Sometimes you must quit working to be eligible for benefits - I know, it stinks. My neighbor had to spend all their savings for her disabled dh to be able to go onto Medicaid/Medicare when he fell out of a tree and it paralyzed him.

The flip-side is that now he is eligible for all benefits and supplies are given to them for free - he isn't a veteran either. I can attest to how expensive even the basic supplies are. Thankfully my DH is a veteran but you still must know enough to ask for items as they are not just supplied.

You also might need a different Home Health Care group - we were put with St. Lukes and they do believe in supplying many of the supplies, like bandages. You wouldn't think bandages to be costly - but they are. St. Lukes also does Hospice and they are awesome! They did my dad's hospice 6 years ago.

Perhaps you can contact your Local Medicaid Office and see what they recommend. I know it is harder in a large city like Chicago (I come from NYC) but I have gotten a lot of good advice by going to the source. Medicaid helped me many years ago when I was incapacitated for 8 months. When asked, they offered me all kinds of help.
LittleMidnight,
Unfortunate but good suggestions. Using the equity in your home is often the best way to get through financial troubles and CCCquilter, many of us have had to either quit our jobs or go to part time. That is the reality because there are many with good intentions but for how long that will last is nothing concrete you can count on. Possibly looking for work that you can do from home? Telecommuting is becoming more popular but I don't know what your career and background is. I caregive for my Mom here at home, she has dementia and lymphedema in one leg. I had to leave my career and go into caregiving part time so I could learn how to care for Mom as a professional without her having to pay 30.00 an hour! She pays me 30.00 a day. I was also trained to care for her lymphedema so there is another expense she does not have to pay for. My husband is the breadwinner and without him, the house would have had to been the $$$ resource. My brothers cannot and would not help so that basically means I am on my own regarding family to assist. I am sure there are resources out there but if you have property, that counts as assets so the state won't help if they can prove there are assets or any relatives have money, etc. It is not easy to get the state to cut a check, they will go through everything!!!!! Isn't it sad how many of us get put into this situation and the government will not acknowledge that people have to be destitute before they will help. No regard for the caregivers who end up throwing their careers and lives away just to help their spouses or parents.


All amazing advice! Another idea if you have an extra room in the house is to rent it out to a caregiver in exchange for room and board but definitely look at the community resources out there. Take care of yourself.
I thought you said he is both disabled and on hospice care. What more does he need to move into a hospice house?

I sure feel bad for you.

I assume that if the kind of work you do could be done from home, you would have already discussed that possibility with your boss, right?

Do you have insurance policies you can borrow against, to make it possible to take some FMLA time? It is more debt, but you can chose whether to repay it or not.
http://www.egyptianaaa.org/SpousalImpoverishment.html

I would find a certified eldercare attorney who is familiar with Medicaid in Illinois. Call your local Area Agency on Aging; they may maintain a list of lawyers
And Google " prevention of spousal impoverishment Illinois"

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