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My 62 year old mom has had a malignant and inoperable brain tumor since February 2014. Her symptoms were manageable throughout radiation and the beginning of chemotherapy. However, in the last 6-8 weeks, she has deteriorated significantly. She had to be hospitalized in late July for multiple seizures. When she walked into the ER with my father was the last time she walked unassisted. Since then, she needs a walker and tires just walking from one room to another. She needs assistance getting out of bed, toileting, dressing, and most other things. She also has serious memory deficits and cognitive problems. The doctor said she is the equivalent of someone with moderate dementia.

My father is 76 years old and although he is physically healthy, he has gone down psychologically in the past 6 months. Some days he just lies in bed and won't lift a finger to help.

I haven't lived at home since I left for college at 17. I work and live 500 miles away. I have a good job, big group of friends, and a girlfriend.

I came home after my mom left the hospital to help out. I thought it would be temporary, but 6 weeks later I am still here. I am trying work from home, but it really isn't feasible because there is a lot I can't do. I've already used up all of my paid leave coming home to visit between February and July, and now I'm using unpaid FMLA to make up the hours I can't do from home. I have about 250 hours of FMLA left to last until the end of the year. My mom's prognosis is uncertain; the doctors think it could be months to a year, and the literature I've read online is all over the place, sometimes the median life expectancy is 9-12 months from diagnosis, other times 2-3 years.

I am in serious panic mode because I'm not sure what will happen next. Sometimes I go to my car and just start screaming and punching the steering wheel. I have already been dealing with the fact that I will lose my mom, who is the person I love most. Now I'm facing the prospect of losing everything else in my life too. I have frequent thoughts of running away, but I'd probably kill myself from the guilt. We have no help either - my father's children live out of state and don't care, and my parents have no friends, church group, or other family anywhere nearby. My parents can afford in-home aides, but my father hates strangers in his home, and thinks they will steal because they are mostly black.

I am angry my parents had me so late in life. I am angry that I have to deal with this alone and at my age. I am angry I have to be power of attorney and make important medical and financial decisions because my father is too weak of a person to do them. I am angry that the one person I always turned to for advice and comfort when times were tough is now too confused and not lucid to be there for me. I am angry at all of the people on this forum and others who act like caregiving is a "blessing". Maybe it is if you have a spouse to go to work and pay your bills, or an extensive support group to give you respite and a shoulder to cry on.

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Your mom is probably overdue for hospice. Talk to her doctor about getting her into that program. They'll help mom and dad work through what they need. Go back to visiting them as a daughter instead of a care giver. Sooner the better.
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Caregiving is very hard work, and not everyone is cut out to do this type of work.... like everyone is not cut out to be a brain surgeon, or an astronaut or a police officer or a ditch digger.

Knam87, I hate to be blunt but it sounds like your Dad is *hiding* in bed. He doesn't want to face reality. Plus he has you there doing all the work, much of which he should be doing for his own wife. He needs to sort all of this out with a therapist.

I highly suggest you return to your full time job. Your Dad will then start helping out or hiring people to help.... I have the same issue with my parents who can also easily afford to hire inside help but refuse to because they don't trust strangers. That is their choice not to hire and they will have to live with that choice. I am not stopping my career because my parents refuse to open up their wallet. I am learning about *tough love*.

I know this is easier said then done... just tell your parents your leave of absence will run out in a couple of weeks... you really need to keep some of the remainder of the FMLA in case you need it later in the year, either for yourself, or to come back home for either your mother or father.

I am hoping you make the right choice. Good luck.
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You are really young to be going thru this situation. I completely understand your anger and resentment. When elders have the funds to provide themselves with help and refuse because of cheapness, fear of strangers ect it just infuriates me. They expect their children to provide for them when they have the ability to provide for themselves but are just too cheap or paranoid to take out the wallet. If I was in the situation and had POA I would hire someone and they get paid from the parents funds - period. I would set up meals on wheels to be paid from the parents funds, get a housekeeper once a week, and get some care in for your Mom. Hospice might be next as it sounds as if your Moms disease is progressing rapidly. I would then leave and go back to my life, checking in frequently via phone and wait for the next crises to use my leave time.
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Knam I agree with all the good advice you have been given and definitely recomend hospice ASAP. These brain tumors tend to progress very rapidly once the patient begins to go downhill so your Mom may only have a very short time. Leave her at home with hospice, if Dad can not or will not care for her they will arrange for her to be admitted where she can get the proper care and if dad is not prepared to pay insist that he hire people to come in to do what is necesary to suplement what care they are able to supply. I certain would advise you not to to move her closer to you as that would put the pressure on you which is not what you want or can afford. Go back and resume your career and come back as and when it is necessary but do not take on the responsibility of being her caregiver. she will need full time nursing care before she dies and you are ill equiped to take that on and for that matter nor is your father when she becomes bedridden and needs everything taken care of. She will probably become unconscious before she finally dies and I doubt you have researched end of life care. The Hospice will have the experience to know when she is nearing the end and you can return then just to be with her not assume the caregiving roll. Your father may or may not be able to pull himself together some men can step up to the plate and others simply can not do it which is why you need hospice there to monitor what is going on in the home and manage her pain and other symptoms. Take care of yourself and save the anger for other issues. call hospice in on tuesday morning and only stay untill she is admitted. after that call frequently to talk to Mom while she is still able and don't dwell on her illness talk to her about all the things that are going on in your life that is what she will want to hear. Don't judge dad. Give him all the support you can and above all take care of yourself you are about to loose a parent and that is never easy.
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"Dad, mom is past the point where she can be cared for by amateurs. She needs professional hospice - trained caregivers, and she needs them here, in her own home. I have to leave to go back to work next week. Do you want to call Hospice yourself, or should we do it together? "
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Knam, I hope I'm wrong here or too alarmist, but a scenario I see possibly in the pipeline is that after your mother's death, dad will decide that you are his "wife" substitute and will pull out all the stops to see that you become his caregiver. That is why involving hospice to secure care for mom, while making it clear to dad that he is on his own (I'm assuming he is not suffering from dementia) ...the sooner he "gets it" that there will be no woman to enable his life and that he needs to start learning to cope, the better.
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Hospice. You actually need them more than she does. You need the counseling, you need the visiting nurse, you may even need some Ativan. They care for all of you, not just the patient. You might want to share your anger with your own doctor, and inform Dad's doctor of his mental withdrawal. Your stomach flip flops. You get diarrhea for no reason. You lie awake and argue with the ceiling. You kill a fly with the vehemence usually reserved for an invading army. Been there. Done that. Got help. Saved my own life a probably a few others.
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Knam87. You need to leave and reclaim your life. I have not read where many on this site consider care giving for parents a blessings. Many find it the complete opposite and just do not know how to get out of it. I think care giving is a condition, either we can do it or we cannot and should not. I think you are in the later category. But you have an advantage that some of us do not have, that is POA for Mom. Use it, get her into a nursing home, make the end of her life about her and her needs. You CAN do it. You are too young to give up so much.
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Knam87, I wouldn't suggest moving your mother closer to you. Two things, first she will need to start from scratch with all new doctors, surgeons, Oncologists, primary doctor, etc. That can be terrifying for someone going through a serious illness especially if one trust and are comfortable with their current doctors.

Second, what would really change in regard to caring for your mother? You would still be doing a lot of the Caregiving, and moving your Mom could cause her more confusion and she would need even more care. And what would your Dad do? Leave the house and move with her? Yet another person you would need to take care of.
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I wonder if you are man or woman. Not that it makes any difference, I am a woman and I could not be a care giver for my mother. She is difficult to be around, for even 3 days.

I would try to get your dad to a doctor. I would put it bluntly. "I am leaving in 5 days. My job will not wait." He is not having to do anything, because you are doing it all. At this point, your mom may outlive you. I have seen it happen.

It sounds like you have done the very beast that you can, for your mom. Now, do that for you.
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