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.
Just a tip, say that you are in crisis mode and that you can not handle the situation.
As I understand it, not all hospices have this service to relieve the family and it's only for a limited amount of shifts, but it is something.
Check to see if your hospice offers "crisis care" shifts.
Maybe I missed this in the previous posts, but doesn't hospice offer you some respite time, cc? In your situation I would definitely take it!
Best wishes you really need respite or you are going to crash
Lots of times when I hear things like what cccquilter is going through it puts me through a whole range of emotions.
Frustration.... that it is so difficult to get the help that is wanted and needed.
Anger.... that we have to force or are forced to do things like divorcing a person so that they qualify for aid, or impoverishing someone or at least spending down a good portion of savings or penalizing one spouse that has saved, particularly if they entered into the marriage later in life.
Sad ..that in a great country like ours there is sometimes no option but for a working spouse to quit their job in order to stay home to care for a family member. That often results in loss of self by way of removing socialization at a time when it is needed, loss of income and that may result in loss of home, or at least the possibility of having to go on some sort of welfare. Assistance with food, housing, utilities....
While Utopia does not exist there is no reason for ..
Children to go to bed or to school hungry
For our elder to go to bed hungry
For ill people to not get help that is needed
For families of people that need 24/7 care to go through additional stress when it comes to trying to find ways to get the help that is needed.
My list could go on but enough for now....
Stepping down off my soapbox now.....
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.
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.
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.
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
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.
Are there any law schools in your area that might hold clinics?
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 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
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.
#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