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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.

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notaneasyday....first i'd like to say how sorry i am for your father and your family. i don't think anyone is really prepared for situations like this. my father has some money in the bank, and i will get 1/3 of the property...so i did retire at 58 yrs of age to care for my parents. my mother is now in her final stages of life...dementia...and god...i NEVER expected life to be this hard...and i love my mother!!! i have not had a life for years...lost my friends, tooo tired to make new ones...and i have two of the worst brothers...no help, no emotional support. if your dad has income and property for you to inherit...maybe you could leave your job. if not, you have to do what is best for you...because who is going to support you??? good luck...keep posting updates for us!!
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Just treasure the time you have with him. I wish everyday i would have spent more time with my mom before she died. Right before she went my brother & i told her to go & that we would take of my dad, which i have kept too. I am taking care of him without too much support from my brother. God bless you at this time.
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I'm so sorry for you and your Father, I think as other's have suggested that he needs to be in the hospital where he has 24/7 care. His Cancer is spreading fast and I'm sure the pain is getting worse. If he were in his right mind he would not want you to lose your job or your home. Just get him in the hospital and spend this time with him before he is gone and I would let immediate family know he's going fast so they can all come to visit him. My brother's cancer spread so fast that when it got to his brain he was gone in 2 days. He died within hours of being hospitalized. I feel bad for you as I know what you are going thru, just be there and hold his hand and let him know it's alright to go. Some people are waiting for family to release them so they know it's alright to die. Hugs and Love to you!
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If your father has been affiliated with a church, you might contact the pastor and ask for help. Our church surprised us with meals and offers of respite care without asking because our pastor was aware of the situation.
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I'm a caregiver for my dad who is 87 & is a vet & i was told that i could contact the va for getting paid for taking care of him. My brother has a friend who gets paid from the va for tsking care of her dad. Fortunately, I'm able to work part time. Good luck, i know it's hard but remember that you will not feel guilty for the times you spend. eith at this time of his life.
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Hi Not, I'm so sorry this is so difficult, especially you living out of state from your Dad. I had a parent on Home Hospice too, while working, so I know a little of what you are going through. Regarding moving your Dad to your home, I would not suggest this, as it would take him away from his home where he is most comfortable, his care team, and he would probably end up having to change his health insurance coverage, so way too many balls in the air, and too much work for you. Regarding Veterans benifits, while he may qualify, if he did serve in the military and during a war time period (though only one single day of conflict is the only requirement), it may well be too late to begin this process, unless you have already done so, as it can take greater than 6 months before it goes through. I do think your best bet is to see an elder law attorney, and with your Dad's blessing, have him draft up a caregiving contract, where your Dad agrees to pay you a set amount per week or month, this way, you will be able to pay your bills while you are caring for him, and keep your home, until you can return. Also, have a good conversation with your employer about an extended leave of absence, should your FMLA expire, and perhaps you can do some form of your job from your Dad's home, or a different position temporarily. Speaking with the Hospice social worker is good too, as often they have dealt with simular circumstances. I am sorry that your Dad is dying, he's very lucky to have a kind and caring daughter like you! Take care!
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Being on FMLA, can you travel to be with him for a couple weeks, and then ue that time to create a plan? Hospice should have a social worker or others who can help you with what local resources there are, and what choices you have based on his finances. You may be needing to spend a few hundred (of DAD'S money!) to consult with an eldercare attorney to help with the plan. Do you or others in the family have POA? Are all his end of life paperwork in order....will, health care POA, desires for end of life, funeral/burial paid for? This is all part of the financial planning for an elderly person, but especially one dealing with cancer. Hospice should be able to facilitate discussions about these things and help make them happen if they are not already in place. Applying for VA Aid and Attendance, if he's eligible (meaning less than $80,000 in money and a veteran of any war basically), and Medicaid....takes months and lots of time, which is why an eldercare attorney can help. Both these programs pay for some part time in home care, or pay facility fees for nursing home type care or placement in a small care home with 24/7 caregivers. Most elderly want to stay in their own homes, but fail to realize that often this requires caregivers coming in to help them and that eventually one needs 24/7 care in the end. It becomes either a placement somewhere, or moving in with family or having family move in with the elderly person, until death occurs. But ONE PERSON simply cannot provide 24/7 care of a person in the end of life situation. So, a plan is necessary. I would start with Hospice, since they are already involved....and they should be experienced at putting together such plans and have resources that they can refer you to....
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Please disregard comments of person who suggested calling Griswold. They are not a real home care agency, they are only a placement agency and they don't train, certify, or provide employer services such as payroll tax withholding, workers' comp insurance, liability insurance or crime bonding. If you decide to seek professional caregiver services, whether it be through private pay with your father's money or through an assistance program such as VA Aid & Attendance, please seek out a reputable company that actually employs their caregivers and offers the professional training and coverage necessary for the best possible care for your father, while at the same time protecting your father's assets as well as your own from risk and liability. Best wishes for your situation.
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Your hospice social worker should be very involved in helping you!! Ask for that help. The hospice philosophy considers both the patient and the caregiver to be the "unit of care," so this service should be forthcoming. Be assertive in asking for it.
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Thank you for all the help and advice. I appreciate it so much. I'm starting to figure some things out, but it's difficult. The advice on here has helped a lot and some things are beginning to get worked out. I don't know how long my dad will be around, but things are safer for him and he has a bed and a commode and things to help him from falling and from getting as short of breath. He has been declining quickly, but he is still in there. I have learned more about finances and how some of that works. Thank you for the help and the hugs.
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Notaneasyday: I was told by many a professional to ABSOLUTELY NOT USE YOUR OWN MONEY TO TAKE CARE OF YOUR ELDERLY PARENTS!
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Is there an on patient hospice facility near your dad's home? That might be an alternative. Also, call the agency on aging and ask to speak to one of the social workers- they may have some ideas. IF dad does qualify for Medicaid, there is a program in Virginia called Community Based Care. ( it may be called something else in other states). This program will provide an aide up to about 60 hrs a week/ over 7 days...You could also be the caregiver/ they will pay you but the pay is about 10.00 an hr. Hope this info is helpful.
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Sorry I didn't read all posts. Some states have hospice centers where hecwould be taken care of 24/7. You should be given an aide besides a nurse checking on them. I would not go in debt over this. Need to get family together and explain this.
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When my Mom was terminally ill, one of my brothers, two of my sisters, and I were able to make arrangements to stay with her. My brother worked off-shore and was home for two weeks a month; he has two young children and his wife didn't work, so they would go to Mom's for a week (about 150-200 miles). I had a young child and worked from home, so I would stay with her for a week each month (about 150 miles from my home). One of my sisters would stay with her 2-3 days a week on the weeks my brother and I could not come (she's a nurse and lives about 50 miles away). The youngest sister lived in the same community as Mom and stayed with her when we weren't there. I have another sister and brother that would come on week-ends, sporadically, to give my youngest sister a break. It all worked out for us and none of us were overburdened with her care. It was helpful that 4 of us had flexible work schedules. I think it's a great idea to have a family meeting to discuss shared responsibility for your father.
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If your helpful relatives are in close proximity to your father, I wouldn't try to move him to another state. I think you have to have that family meeting where you all agree on what is best for him - a hospice facility or staying in his home. But to stay in his home, you need them all to agree to participate. I agree with the suggestion they can also take some family leave time to give you some help on a regular, daily basis. Then you can create some kind of schedule and everyone will understand your father's needs/medications. You sound like a responsible person. I would sit down with my boss and have a frank discussion about your understanding of your father's prognosis before going to HR. They usually want to do everything they can to retain good employees. Then I would think about what household costs I can suspend in my home while I am away (gym membership, cable TV, etc.) In that family meeting, I would bring up the idea of some stipend to help defray my expenses and see if you can't come to an agreement with your supportive family. I have to tell you that my mother died before I could submit my FMLA to HR and I lost the job anyway a few months later in a downsizing action, so nothing is certain anymore. I have had to draw prematurely from my retirement savings to live on while taking care of my father. Now at 60 I need to find a job again. Bless you for taking care of your father in his time of need.
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My husband has had a stroke and I take him to work with me as he can't be left alone. Fortunately, it is a family business and he behaves well enough to stay out of trouble...but he absolutely can't be left alone. There are no adult daycare facilities in our little town and I can't afford to have someone come stay with him. Sometimes, there just aren't any easy answers. I did meet with an elder attorney and he said if the time comes when he has to go to a 24-hour care facility, he will speak to him directly and tell him he has no choice. I hope that day never comes, but it was helpful for me to meet with the attorney and learn what my options were in the event he needs to be placed somewhere. Those options included a financial plan so that it won't take all our savings and leave me destitute if he has to be placed in a care facility. It is well worth it to get that kind of legal advice and having a financial plan has taken a big burden off my shoulders.
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You don't say who you work for but employees over 50 have to have family so I assume it is at least a smallish to medium-sized place. Is there any way you can work from your dad's house? If not then you need to hire a caregiver during the week and go home and work and come on the weekends and arrange it with your boss. You don't say who you work for it might be helpful if you could work remotely.
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does your father have enough income to pay for a 24/7 caregiver in his area (even if they change off shifts). then you could visit on weekends or whenever possible. remove all valuables from house if he is worried about that and put into a lock box or safe. then the other siblings could visit to make sure things going okay. it is a hard road to travel and wishing you luck. sorry for your fathers illnesses.
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Is your dad a veteran? If so, there are programs that will help him. Aid and Assistance will pay about $1800 per month. I know that's not much, but better than nothing. There may be other programs as well. The VA has counselors to help find the right program.
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Not - I am so sorry for your troubles. But now you must be STRONG enough to do the right thing for EVERYone (including YOU). It would be completely irresponsible for you to give up everything to care for your father (or anyone else). Who is going to care for you? How are you going to regain your career or even a job?

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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The pain from cancer can be extremely severe. Home care with periodic hospice visits to manage the pain can be insufficient. It is cruel to keep him at home if he is experiencing the ravages of cancer pain. I suggest you coordinate with hospice to have him admitted to a skilled nursing care facility for 24-7 pain management and skilled nursing care.
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By what you describe in regard to your dads health condition, possibly the cancer has spread to his brain, I'm sorry but he probably does not have long, six months maybe. I'm familiar with cancer that spreads to the brain, once falling starts in my experience, it was four months later my mom passed and she was young when she passed. You're dad should have an MRI of his brain if you think this is a possibility. On income, I'm sure you've considered all options you can. Maybe possibly move your dad to your home, even though you're out of state, he would find that better than a hospice facility, it would be easier to manage your own schedule from your own home, you can have hospice come in, and possibly hire a health aide to come in and assist you, your dad's social security could pay for some of that. Typically they're paid 15.00 an hour. You would have to shut your dads home down, that could be done temporarily, that'll make him feel better about it. Caregiving is difficult, very few people are really cut out for it, it's very easy for people to just stop by now and then and drop off some cookies but to be there day in and day out to the very end requires a lot of inner strength. Don't know what you do obviously for work, but is it possible you could arrange to work at home? Some people can even arrange to do their work on line, if they're in sales, or anything where their work can be emailed or faxed back to a main office, even if that could be done partly it would help to hang onto some income, it would give more time to spend with your dad and you'd still get paid from your job.
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Does your Dad have a Life Insurance policy? if so message me I'll give you some clues if you provide details.
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I'm so sorry. Watching your father like this and then worry about money is horrible. Most of us completely understand since we've been in similar situations.

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
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Hi there, please make sure you explore all the possible external financial help to enable you to do this for your dad. Ask your employer if you can take a career break?

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
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Not, I'm so sorry that you're going through this. I don't think that there is a way for us, "the kids" to prepare for our parents' end of life difficulties. the best we can do is prepare for our own end of life and involve our children early on in planning.

No parent should ever expect a child to give up a job to do hands on caregiving.
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Well there are options - there are always options but not always palatable options.

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
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Sorry to hear about your dad. Is he a vet? Get in there and pay for aid and attendence. Call Griswold get 24/7 care. Between soc sec pension and aid and attendence you should be able to provide him care in his own home for the time he has left. It's alot of work but it can be done. You can also draw up caregiver contract and be paid if you would like to do the work yourself but that doesn't help your current job situation. It's dad's money let it pay for his care first.
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Is there any possibility of Home Health services to come in to do some things? Also, can you just get paid by your father for taking care of him? It seems only fair since he won't leave his home. Or is there a hospice facility in his home town rather than having hospice come there? I remember when my mom died at home of brain cancer my dad had hospice and they provided people to stay with her during the night so my dad could sleep. There are options, I'm sure.
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First, I too am sorry to read about this sad development for your father and your family. Despite advances in control and management, cancer is still a devastating disease, although it's not the only such frightening disease that affects us.

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.
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