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.
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.
My sig other hid out in bed back when I was diagnosed with a serious illness, turned out years after the fact that I found out he was terrified. He just didn't know how to handle illness well. And I had to learn to ask him when I needed help instead of thinking he was a mind reader.
But the main thing is, don't be frightened by your own emotions as you try to figure out what to do. And don't let ANYONE put you down for having them. It is not likely to be easy. Moving someone who is in bad shape can be done, there are medical transports even for long distances, though they can be pricey. Air travel can work really well for someone who can walk for at least short distances with a little advance planning. Southwest is really good about this if they are an option. My colleague here at work moved her sister from California to live here in Arkansas when she was on hospice from endometrial cancer so they could be together for that unknown length of time. So, that MIGHT be an answer...or might not..and it sounds like it is both burden and blessing for you to have the POAs in this situation. If you decide to sacrifice what you have now to live close to Mom and Dad, you may end up not regretting it; or, it might be an awful waste. It is hard to know in advance. If you make the best decisions you can, with love in your heart - which you can have whether you are rightly or wrongly angry or not - then it will be the "right" thing at some level, and you can hold your head up and go on. There may be some regrets no matter what, there is always some other fork in the road you could have taken the other way, but we are only human and can only live life forwards. And remember, these things suck at any age. Just ask the 40, 50, and 60 year olds on here going through it with you. (I'm 56, and get to say that right up to the end of September :-)
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.
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.
I'm willing to take care of her, but on my terms. That means moving her to my city in my apartment and hiring someone to take care of her while I'm at work. The caregiving itself is hard but manageable. My fear is losing my job and my friends by becoming trapped in my parents' town. Then I will literally have nothing left after my mom eventually passes away.
Maybe then your Dad will start calling other family members to help out, like his other children to help him with caring for their step-mother. Your Dad's other children got to peruse their careers, and so should you.