How to balance caregiving and working full time?
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.
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.
My heart goes out to you. None of this is your fault! The way we handle health care in the US is a disgrace!
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.
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.
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.
#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 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.
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
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)
Are there any law schools in your area that might hold clinics?
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.
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
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.
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.
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.