My father is on hospice in Kansas And I Live Out Of State. He has been living alone, but can't be alone any longer. There is a will and all the finances are set. I am on FMLA to be here to take care of him. To qualify for financial help as a caregiver I assume it requires my father to have less than a certain amount financially? This is all new to me, but I've got bills to pay and I'm unsure how to keep from losing everything while taking care of my father. Hospice doesn't have 24 hour care, they come once a day and at this point twice a week. I have brothers that have come to visit, stepsisters that are incredibly helpful and my aunt comes to visit when she can. Right now I'm the only one here and it's very hard. My father will not leave his home and I don't blame him. He is not able to function well enough to be by himself though. What do people do in this situation? I've got bills to pay and I really don't know what to do. This is a very hard place to be emotionally and financially. Does anyone have advice? Contact information for help with maybe counceling, financial things or anything anyone has found helpful? My father has metastatic cancer. It is aggressive and spreading fast. It's in his right lung, neck, clavicle area and head. He is confused at times with hallucinations and the cancer is quite possibly in his brain. He's had several falls and needs help with activities of daily living. Thank you for any help.
It seems as though you get along with your siblings and your dad won't live long enough for Medicaid, so if everyone agrees, including your dad when he's lucid, maybe you can be paid out of his funds. If the family agrees to this, have an agreement notarized. Perhaps the estate attorney who drew up the will and other legal documents can give you some advice.
If your dad may live long enough for all of his money to be used up, then you may have to be dealing with Medicaid. In this case you'd need an elder law attorney.
Good luck. This is a scary and heartbreaking place to be,
Carol
I am glad that you have support of family, even if you're the primary caregiver right now.
You wrote that your father is receiving hospice care. I don't mean to be maudlin, but is there an estimate of longevity given the aggressive nature of the cancer?
Since this is a terminal situation, you might inform your employer and ask if there's a way that FMLA could be extended, drawing in advance from vacation and sick days, or perhaps you could make arrangements to work out time off if you did have to spend longer than FMLA allows.
It also wouldn't hurt to contact your creditors; utilities might be agreeable to working out plans to spread out and equalize payments over an annual period. Depending on who your mortgagee is, some temporary payment plan might also be arranged.
Is your father a veteran? If so, you might be able to get assistance from the VFW or American Legion for expedited support.
I don't know if this would provide any relief other than knowing you're not alone, but Gilda's Club in our area has been a strong supporter of individuals and families dealing with cancer. They might not be able to offer guidance on financial issues, but there are support groups for various kinds of cancers. At least you'd be able to connect with others facing similar situations.
Gilda's Club may also have information on some of the cancer charities as to whether or not they could provide financial assistance, although I suspect that most of the national ones focus on fundraising rather than direct financial support. My sister couldn't even get one of the major ones one to help support her when she requested leave during the second round of chemo treatment.\\
There are also respite activities in the form of specific cancer type meetings, art and music therapy and pot luck suppers. If nothing else, these meetings might provide some personal relief and support for you.
CURE magazine is excellent for providing articles on a range of topics affecting cancer. It's available free to those dealing with cancer as well as to their caregivers. It has a website, but if I posed a URL, a portion of it would be truncated by the filters in place on the website here.
Other possible sources on advice might be the local hospitals and/or infusion centers which have social workers on staff, and/or the treating oncologist.
Right now your two choices are be away from your job [FMLA will last only 3 months, then what?] or place your Dad in a higher level of care at a continuing care facility. So that you don't lose your job and all the benefits that come with your job, your Dad may have to reconsider what is best for the both of you. Elders normally do not like leaving their homes, but there comes a point where they no longer can remain in their home.
See if your Dad can be approved by Medicaid, thus Medicaid will help with the cost of being in a continuing care facility. If he refuses, then I don't know what you can do. I don't know of any government program that pays a full-time caregiver. Some States might offer you payment but it would be minimum wage at just a couple hours per day. Call your Dad's State Medicaid office to see what is available as each State has their own rules, regulations, and programs.
Otherwise, call your Dad's local county Agency on Aging to see what programs they offer, such as Meals on Wheels. Maybe a volunteer who can stop by for a hour every now and then. Call the Hospice group for information, too.
No parent should ever expect a child to give up a job to do hands on caregiving.
You could be very hard and say I am going back to work and I have to tell APS that you are not safe to be left alone but really that will be a ghastly option for him and for you...just remember you have to live with decisions.
If you company would let you could you have an unpaid leave due to extenuating circumstances and arrange for your dad to pay you the same amount as you would have earned during that time, that last bit is important for you must not lose income or pension through caregiving - while I know you may not want to take the money a chat with your family will soon identify the issues. Do make sure there is a job to go back to though.
The best option and the question I keep asking myself is why aren't your brothers offering to take take FMLA one after the other or perhaps your stepsisters could stay over a couple of days a week - just because you are female doesn't make you the SOLE caregiver.
As you have said and I can't imagine how hard this is for you your Dad isn't going to be with you much longer especially if the Cancer is aggressive. Do try to get your brothers to step up and take a full share in the care. DONT lose your job over it - please don't..... the regrets are too great
I gave up my well paid job rented out my house... Rent wasn't paid, house trashed.
Dad wouldn't pay me a penny, I was his only carer, I have two sisters and he has a girlfriend ... Who wouldnt lift a finger.. But helped herself to his cheque book.
He was only expected to live a month, but after one year, he's still here and I have had to start all over. I know I did the right thing but boy oh boy... I'm full of resentment and anti depressants. Take care of yourself as well xx
As others have said, it is likely time for him to get 24 hour care. You must tell your siblings that you can only provide this with (1) adequate payment to cover your own expenses, and (2) regular respite -- and that is assuming that either your employer will extend your FMLA - OR - you believe that you can find another equal or better job after your father passes. Otherwise you will all need to make other arrangements for his 24/7 care.
It may be unrealistic to expect your father to act rationally at this point. He may be too far "gone" with cancer in his brain and/or pain and the drugs involved in pain-mngt. That means that you - and hopefully your siblings - must step up to make the difficult decisions that need to be made for everyone's best interests.
As my dear mother taught me - "Life is hard and then you die. Get used to it." I used to think she was a cold-hearted b*tch - now I appreciate that she was preparing me for the vagaries of life.
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