How to balance caregiving and working full time?

Ccc, I'm sorry your husband is so ill. There must be some other angles here! Through Medicare his doctor should be able to order a certain number hours of nursing per week. How often is hospice there? Speak to HR at work, your benefits should include (forget name) medical care leave. Others will have good ideas. Wishing you well.

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.

No, he is not a veteran. Money is tight, so out of pocket expenses cannot be considered. Social worker is looking into hospice volunteers, so hopefully something will come of that. We are Christians, but not members of any church. I am signed up for FMLA, yes, but that is unpaid leave, so using that is out of the question without vacation days involved, and I only have six left.

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!

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.

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.

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.

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.

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.

No, he cannot be moved to hospice accommodations. The rules will not allow this, as he is not yet at that point. I cannot quit working, as I keep a roof over our heads. I have checked with Medicaid; he does not qualify in IL, where we live, as they look not just at his income, but mine also. Florida has different rules than IL. FMLA is fine, but it is unpaid leave, so cannot use it without vacation time involved. I didn't qualify for respite aid due to my income. We were denied Medicaid in IL. A home equity loan is out of the question. I don't need more debt! Hospice supplies everything he needs and bills Medicare, so his needs are taken care of. I am just short on sleep and time is at a premium.

You actually have 2 full-time jobs. I hope that you can get respite from somewhere.

Thinking outside the box.. how old are your grandchildren? If they are early teen or so, maybe you could pay them a bit to help you around the house.. like do the laundry?Not too much, but enough to give you some more time?

A few ideas:
#1 Meals from church friends
#2 Meals in Wheels
#3 Yes, help from grandchildren. Even a 10 y.o. can sweep a floor, dust a cabinet.
#4 Get help from VNA

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"

About "moving into a Hospice House"
Hospice, at least the few I know of, have "inpatient facilities" that are for respite and that would be a week. Or to get uncontrolled pain under control. Or for really close end of life if that can not be handled at home.
The idea of Hospice is to, if at all possible to allow the person to die in their home with family near and comforting, familiar surroundings.
So  "cccquilter" would not, under most Hospice guidelines, be able to place her husband in a Hospice facility for an extended period of time.
And due to his condition the only place that he would be accepted would be a Nursing Home. Since I imagine he requires a Hoyer to be moved. Most Assisted Living, Memory Care facilities are no longer able to use equipment to transfer a resident. (obviously wheelchairs are not in this category)

I would consult with an Elder Law attorney, who is WELL versed in Medicaid and State benefits that someone in your husband's situation may be entitled to. The problem with listening to what someone who is not very well informed, is that they don't know technical issues that could make a difference. There could be something legally, that has not been considered. AND, I'd consult with a Family Law attorney to see what your rights and obligations are regarding your husband. You may need two legal minds working together to be creative and to find you some options.

He would be miserable in a nursing home and hate it. He wants to be home; I want him to be as comfortable and happy as possible AT HOME. That is not an option without his specific consent, and I will not do it without that. My mother was placed in a nursing home against her will, but she was alone and falling, and I don't think she ever forgave us for that. So I will never do that to my husband, and never mind that it is totally unaffordable for us. I can't afford a lawyer. It is so easy to say to consult a lawyer, but that is so very expensive! As I said, we have a fair amount of debt and I do not want to add to it. When he is gone, I will have his SS to help me stay in the house so I can ready it for sale, but right now it is used for paying utility bills and buying his supplies that aren't covered. Meals on wheels wouldn't work; he has a feeding tube and his swallowing capacity is quite limited. I do not have an insurance policy that I can borrow against. Also my job is one that has to be done on site; it is not something I could take home, unfortunately. Our grandchildren are quite young, 6 & 7 and are not even close to walking distance; we see them about every week or two on weekends. They love to garden with me, but as far as cleaning, for me I don't want to assign them chores at Grandma's house. I want them to want to come see us, not dread it. We don't see them enough for that, anyway, so we just enjoy them when they can be with us. FMLA time would be nice, but that is unpaid, so if I do that, my mortgage will go unpaid. I wish there was some way out of this, but there is not, apparently. I am so very tired. Once my brother leaves, he will be on his own most days. I may talk to a neighbor to see if she can help out, as she is a teacher and off for the summer; he knows her well as they are close friends, so that might work for me; I have yet to speak with her as school is still in session.

Living with my daughter would be okay with me. It would not be okay with her father. She tends to be a bit bossy and he does not respond well to "bossiness." She suggested it once, and he rejected it out of hand and still does. Also, it would take considerable time and effort to make the house marketable; something that will have to be put off until a later date, as I have little time or energy for that now.

Thank you, everyone, for your excellent advice. Unfortunately I have explored almost all of them and was forced to discard many, such as an attorney, as far too costly for us to pursue. I will check the property tax exemption/homestead exemption/senior exemptions, as they may help with that aspect, as we have some of the highest property taxes in the nation, and it is onerous.

CC, how sure are you that your husband doesn't qualify for Medicaid?

Are there any law schools in your area that might hold clinics?

Www.cvls.org

"As applies to the Community Care Program Services

The Prevention of Spousal Impoverishment standards for Community Care Program services, mandated by Public Act 87-740, seek to prevent a married couple from being impoverished by the costs of long-term care, allowing them to maintain an adequate estate and monthly income, while providing a resource which will pay for Community Care Program (CCP) services for the impaired spouse.

It is the policy of the Department on Aging that CCP applicants/clients who are married with one spouse applying for CCP services are required to apply for Medical Assistance through Medicaid and be eligible or enrolled with a spend down for such assistance to be eligible for CCP services. If they do not meet either of these eligibility criteria, they cannot receive CCP services.

Spousal Impoverishment Prevention allows a couple to divide their assets for purposes of eligibility when one spouse needs Medicaid payment for nursing facility care or Community Care Program services. The spouse not needing Medicaid payment may keep $109,560 in assets."

This is from the Illinois.gov website.

You can divide your assets. You get to keep in excess of 100K. By the looks of this, your husband would qualify for Community Medicaid, which would entitle him to some number of hours of home health assistance.

The link that I posted above if for Chicago Volunteer Legal Services. I think you should check this out.

I will check it out. Thank you.

Barbrooklyn
Good advice I think he could qualify for Medicaid under that program. I don't think I could survive without the help I get from Medicaid
She is in a crisis situation

Last ditch effort, you could "play the system". Take him to your hospital ER department for 'weakness' and they might want him admitted to a rehab facility for a short time to "get his strength back". It would be buying time. He possibly could remain there for a couple of weeks.
I don't know if he would go along with it or not but it would at least give you a break for a bit. Believe it or not, this happens all the time.

Some hospices also do respite care (the one I work for does), a few shifts are available to assist the family in crisis. Check with your hospice to see if this is available to you.

Go ahead and find a christian church that would most closely align with your beliefs and present the situation to the pastor. I'll bet you'd get some help even if you don't belong to that church. Good luck and God bless.

No, he would not go along with that, for sure! He hates hospitals like poison. He also would not be happy in a hospice placement, even temporarily. He wants to be at home. I am planning on talking to our social worker. Thanks, though!

SueC1957...once you are on Hospice you no longer call 911 and are taken to the hospital. Hospice IS your 911
If you are admitted to the hospital you are removed from Hospice. You can go back on Hospice.
This has a lot to do with billing and Medicare. 
You can be on Hospice in the hospital but you are not able to go to do "rehab".
Hospice in end of life and you have elected to stop treatment, rehab indicates that you have a wish to aid in recovery.

You can be admitted to a Hospice facility for Respite but that would be for a week at most.

Hi Grandma,
Right! Being a hospice nurse, I'm aware of what you mentioned. You can stop and restart hospice at any time, however. As far as I know, there is no restriction on the amount of times you re-enter.
You don't have to be on death's door to be enrolled in hospice. Her husband doesn't sound like he's near the end. I was trying to find a quick solution to cccquilter's predicament. Sometimes just a 2 week respite can provide enough relief to keep on going.
There do not seem to be many solutions to her problem. I'm just trying to think outside the box.