Follow
Share

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.

This question has been closed for answers. Ask a New Question.
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.
Helpful Answer (5)
Report

"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? "
Helpful Answer (5)
Report

Knam, you posted "my father balks at the idea of anyone other than family taking care of my mom", and what is he if not immediately family, he needs to step to the plate and help instead of being a standbyer with his hands in his pockets doing nothing. That is why you need to leave, go back to your job, and let your Dad start to adjust with his *new* role as Caregiver.

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.
Helpful Answer (3)
Report

Knam, what father thinks is his problem. Your responsibility is to your Mom and making sure she is taken care of. For that to happen, you also need to do what you need to do for YOURSELF!
Helpful Answer (3)
Report

I am aware of senior resources and all of that, but my father balks at the idea of anyone other than family taking care of my mom.

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.
Helpful Answer (0)
Report

Rovana, learned something new today. I have never heard the term broken reed. Interesting, I could tell what it meant, though. I suppose now, as has happened many times before, now I will start hearing it everywhere.
Helpful Answer (0)
Report

Hospice is an excellent suggestion - you want mom safe and they can do it - don't depend on dad - he is probably a broken reed - a lot of men that age think that everything like caregiving, housekeeping,etc. is just woman's work and nothing to do with them - they expect to have wife, daughter, etc. etc. do everything without the man having to lift a finger. Sounds like hospice could take better care of your mother than your dad could be trusted to do. I don't think it wise to be sentimental here - if he is a broken reed, better know it sooner than later. Take care of mom and leave dad to his own devices - either he shapes up enough to take care of himself, or HE better make other plans. Don't go there yourself - you are much too young and need to provide for your own future.
Helpful Answer (1)
Report

Yes hospice workers are exceptionally wonderful people - otherwise they probably would be in another business. Please check her insurance for hospice care and talk to her doctor about it. I agree with the above poster - you might want to see someone for yourself also - an impartial therapist can do wonders in helping you realize your own strength.
Helpful Answer (0)
Report

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.
Helpful Answer (3)
Report

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.
Helpful Answer (5)
Report

If you really want to vent. Go to your second hand store and buy a bunch of really cheap dishes.
Helpful Answer (1)
Report

Senior centers will also have a list of resources you can you that you might not know of. Counselors also now places and people that can help as well as giving you someone to vent to. Talk to someone it helps A LOT. I know from experience. And talk to your parents too. If two heads are better than one then think what can be accomplished with three. Explain to them you problems and feeling (yes,even the anger)and see what you might be able to work out between the three of you. And also buy a good fly swatter. Sheis right it helps to smash those pesky buggers. Or punching your pillow helps too. Have a pillow fight with your bed or wall or sofa even. Express your anger or it can eat you up and then your sanity starts to slip.
Helpful Answer (1)
Report

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.
Helpful Answer (4)
Report

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.
Helpful Answer (5)
Report

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.
Helpful Answer (3)
Report

You have a right to be angry. Dad not only has been a bigot and a bit of a slouch but now is making a bad situation worse by inaction AND blocking things that would actually help both you and Mom through a difficult time. Maybe he is depressed or scared - who would not be? Maybe he will and maybe he won't step up to bat if you are not there; you might have to give it a trial run to find out..

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 :-)
Helpful Answer (1)
Report

Knam87, or your Dad might decide he needs to pull up those boot straps and start helping out.

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.
Helpful Answer (2)
Report

Knam, do not move her. Leave her near your dad. I suspect you know having her in a nursing home or on hospice is the right thing to do. And it takes courage to do what is best for her in spite of opposition from your dad.
Helpful Answer (3)
Report

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.
Helpful Answer (6)
Report

If I just leave with no plan, I don't know what will happen to my mom. My father might just "give up". I don't want her to suffer anymore than she already is. I'd like to get her to my city, but I don't even know how to transport her in her condition.
Helpful Answer (2)
Report

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.
Helpful Answer (5)
Report

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.
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter