I am 64 / male/ I have 5 siblings. I live 130 miles from my mother who can't hear nor see well; needs help walking and gets "crazy" on UTI's almost monthly. She "comes & goes" w/ dementia. Her need for caregiving arose about 2 yrs ago when she was living alone. She had 12 cats.. 3 inside and 9 outside. Since then, 5 have died due to old-age.
Every morning: feed cats; clean litter; change water; wash previous feeding pans; dress mom, take to toilet; empty potty-chair-bucket; make her bed; pick up my "pallet-bed" on floor; monitor/ record vitals; install/test hearing aids; change batteries if needed; fix breakfast; deal with home-care appointments and/or dr. appts; toenails; minister meds; flush out feeding tube; laundry etc.. etc.. etc.
She was, and still is a "hoarder"; house is hard to get around in.. she resisted the clean-up all her life.. when she was in hospital, one sister and her daughter "cleaned" some of it "out" (the valuable things), but it caused an explosion of temper and crying when she discovered it.
Two years ago, 2 of my 3 sisters quit coming to help.. argued with her terribly about things that happened 50 years ago; put her in a Nursing Home. Mom fired them as "Powers of Atty" AND removed them from her Will. She replaced POA's with my older brother and my younger brother whom got her out of nursing home. Mom has been the Matriarch of the entire family, choosing "favorites" to handle medical, financial and estate-matters. (I was not chosen. Aha!!! )
My remaining sister.. very greedy (the one who "cleaned OUT" part of the house) was the one who volunteered to care for mom and give baths and such to her 4 days per week. My 2 brothers both work... one retired and one not retired. Each of them spend 24 hours on weekends. I take the remaining day, after driving 3 hrs to, and 3 hrs back home.
Mom is very demanding... she wants us "with her" every minute. She hardly speaks to me; is pretty unappreciative of my time, effort, and financial expenses getting there. To do anything is an ordeal there... everything is "hard" to do because of how "she" wants it done and because of the clutter to be moved or to work around. No bed for me; noplace to store my meds or shaving kit; I must "pack" every week. No computer-services; no cable TV; no comfort; no fun; no laughter; no "light" in the house except artificial light bulbs. In addition, she is uncooperative unless my younger brother is there.
Because I am NOT working, my young brother (POA; Executor of Will AND my mother's little "prince" [Can you sense 'resentment'?]) says that I should spend "more time" there, to allow him to continue making big money.. my sister is honestly mentally ill and a fanatical "Christian". I get flak from both; I get flak from my mother; I get flak from their children... nieces and nephews who "love granny" , but never help out except to bum money and antiques etc. from her. She has 21 grandchildren and great-grandchildren... but no help. I feel like I hate everyone... and they hate me back! The ones who are doing "nothing" are the ones most critical!
I am a 3-tour Vietnam War Combat veteran being treated for PTSD; diabetes; 4 heart-events requiring angioplasty and stent-placements; thyroid; reflux; irritable bowel syndrome; diverticulitis... my joints, bones & muscles are all giving me fits of great pain; prostate-problems and I feel like I'm going CRAZY! Sleeping on the floor and trying to fight-off all the complaints, criticisms and insults is bad enough; but I think about these problems all the time now. I am simply exhausted! All my old friends have disappeared. No energy. The "family" has disintegrated... now, I say I have only 1 brother. I can't stand the rest of them.
Can anyone relate to this mess? If so, and especially, if you found the "right path" to sanity..... please, share it with me! Pleeease? Thank You. -Loyd

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Hi everyone.. and thanks! I am so glad I found this site. Reading your experiences, trials and lessons has already helped me to realize that this... "burnout-thing" is a common modern phenomenon. We can always imagine an old mother lying in bed, a tray of soup or medication brought by a concerned sister or husband.. who kisses her and plumps her pillow. We see it on TV! How sweet! TV doesn't show how difficult it is to lift her out of bed with arms and shoulders screaming with arthritis pain or the humiliation of wiping poop off mom's butt and getting her changed just in time for her to "cut loose" again! TV doesn't show mom begging for every moment of your time; even resenting your 10-minute cigarette break to calm your nerves... and TV doesn't show how devastated a son can feel when he watches his mother sink into pitiful states of depression; confusion... scared about what is happening to her as she loses control and power over her own life and her own body. The heartbreak of old age is not confined to "the aged ones"; for in it, we glimpse our own "endings".. we see in mother, our own loss of power over our destinies.. we see our loss of control.. losses of use of our bowels, bodies, possessions and freedoms. Is this not pitiful?
As I watch this anguish... this "gnashing of teeth"... for myself, I say, pass me the Kool-Aid of Jonestown Colony.. or lace it with an over-dose of LSD.. or strap on a bomb and Air Mail me to Afghanistan with no parachute! Then again, maybe a firing-squad is best..... and pay the doctors and hospitals to provide the marksmen and bullets (THEY need every penny they can squeeze out of the dying!). The whole situation just seems so frustrating... so expensive... so devastating... so humiliating... so impersonal... so wrong!
In the Philippines, old mothers live with their daughters, sons-in-laws and grandchildren until the day they die. The old village-doctor visits when needed and provides minimum medication... there are no oxygen tubes, feeding tubes, monitor wires etc. My lover's grandmother lived to 92 and died at home among her family in 2008. I spent $400 for her casket, and the food to feed visiting family from other islands and towns. I gave her doctor $75... more money than he had seen for 3-4 months.
What has happened here in the USA.. and in 'the West'? When did "old age"; dying and burial become such a profitable enterprise? I am so sad... and so helpless...
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My mother's case manager made a very valid point when we were trying to keep my mother at home. She said when it comes to the point that it takes five people to manage someone at home you must realize they are in need of skilled nursing.. She was correct. But it still sucks because my mom has no idea what we went through to try and keep her home, she thinks we dumped her there to get rid of her if she only knew.. And the real kicker she was never happy at home the minute we brought her home from rehab or hosptial she would tell us what am I doing here I want to go back.. When she was there,, the fifty phone calls a day saying I want to go home.. Ugh, I hope I pass like my father did.. he was never a burden even in his death. Good luck and best wishes to you during this difficult time.
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Indycoop, it sounds to me like you should get out. You are not appreciated, and you are putting your health at risk.

Or you could make some demands. You will quit unless: You get your own room which is empty enough for your bed, bureau, and nightstand. If your brother can earn the big bucks (nothing wrong with that!) then you should be paid for your services. Your siblings must speak to you respectfully, and further abuse or criticism will result in your departure. You can think of more.

You probably will feel guilty, because you are a good person, and we feel bad when we say no. But feeling guilt doesn't mean that you did something wrong. You did something that was not what they want you to do, but you need to take care of yourself first.

I want you to take care of yourself, because you're worth it.
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Carol lyn and Emjo.. thank you so very much! It's great to hear a sympathetic message from those who can fathom what is happening to my mother and my "self".
I have stated long ago, that I think she would be best served in a nursing home.. and she has been in one twice in the past year... for rehab. She did NOT do well in either place. I think she has always had OCD because of hoarding. She was always a hard-worker; tried very hard to take care of kids, cats and dogs etc. Really, she is a big-hearted wonderful human being in many ways; but she was always isolated in her big over-stuffed house. Everyone always liked her... but she had few visitors; never wanted to be away from her house for very long; was a bit suspicious and maybe (?) paranoid and fearful. Certain family-members were "favorites". All brothers and sisters were close by to help her with things... except "me". I went to the war in 1968-72; then later i traveled alot in USA and Canada, Australia; Vietnam; Cambodia; Thailand; Laos and the Bahamas... I was the only sibling who got a college degree and who opened my own business.. a sculpture studio doing mail-order business. For those reasons, and others, I stayed on the fringes of the family; often living in far-away places. I was not very well-accepted by my parents, so I left home early. This was interpreted by "most family-members" as proof that I did not want to "be in the family".
Mom seldom went to restaurants.. never to theaters or events. Very frugal; Dad died 1980. Everything in her life revolved around "family". Hard to work for, perfectionist, secretive; self-opinionated... I found it difficult to be around family and her. I love her but I don't understand her; it was hard to get close to her. Life was boring and always too serious there... I was seldom welcomed wholeheartedly, even when returning from war. I felt "outsider status". So now, I am asked to help her stay out of nursing homes by caring for her.
When in nursing homes and hospitals, she is often restrained because she is uncooperative. It is so pitiful to see her like that, after all, she's my mother! She gave me life. She always makes miraculous recoveries when she gets home.
And I agree to a point... the nursing-home environments are disappointing.. depressing; boring and the hired help are all under-paid; over-worked; discouraged and,mostly, uninspired.
I am so confused about what would be best for her! Still, it's good to hear these practical, experienced opinions from you guys who have gone before me. Thanks again!
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The things that strikes me so much in your situation is how children become slaves to their parents in order to keep them out of a nursing home. If you think of it, is the life of one person so important that others have to sacrifice their lives so there won't be an inconvenience? Good community care facilities are not that bad anymore.

It would not be so bad if caregivers were treated with respect. It sounds like you are not even getting a modicum of respect, indycoop. If you are doing this without charge, you should at least get respect. If you feel like me, sometimes I feel like a piece of gum on the bottom of someone's shoe, and I at least have my own two rooms.

It sounds to me that your two sisters had the right idea in placing your mother in a nursing home. It was practical for everyone involved, since your mother needs so much assistance. I am glad that you only have to be there three days of the week. Still, you need to insist on the things that caregivers need -- a good place to sleep and room to put your things. It sounds like you and the other siblings that help need to insist on a caregiver's quarters -- one or two of the rooms in the house with a bed and other accommodations. It would be nice if it had at least a half bath. Even slaves get that much.

Sometimes I think of how things are in the USA when it comes to elder care. I am hoping that it will be different when the boomers become elders.
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(((((Lloyd)))) these controlling elderly parents are very difficult aren't they? I agree with CarolLynn. It sounds like a very bad scene, family relationships are unhealthy, you are not well yourself and all are being ruled by a 94 yr old woman who may have dementia, who has multiple health issues, who hoards and has a feeding tube. This is a bad scene. APS certainly could be contacted as well as your local agency on aging and social services, to see what additional help could be arranged for your mum. I understand why 2 of your sisters quit helping. They drew a line in the sand and it sounds like you need to as well. It also sounds like you have little to lose except an albatross around your neck. It is, in my view, unreasonable to expect you to look after your mum with your own health issues. Look after yourself first. Decide what you will/can do and will not /cannot do and let your sibs know. I doubt they will understand, but you will have let them know where you are at. You can give them a date by which time you will stop doing your contribution to the care giving, so they who have POA etc. can find an alternative. As far as the flak goes, you can control some of that by screening phone calls, only seeing them in public, and if you get abusive emails let the sender know that you will block the emails if they are abusive. Of course this will change the relationship you have with your family members, but frankly, you are finding what you have now is intolerable. I have had to build up a support system largely outside of my family as they are very demanding and nasty at times. I recommend that you do that and look after your health. Having PTSD is, in itself, a lot to deal with as well as the other ailments you have. I have PTSD too from a couple of experiences - one of them my childhood, and it makes dealing with stressful situations that much harder. Do what is good for you and let the guilt go. Controllers use FOG - fear, obligation and guilt to manipulate others. Don't let any of those drive your decisions. And do something good for you today! Keep in touch and let us know how it goes.
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afterthought ...

you haven't spoken of the financial situation, after evaluation, where your moms condition would be hard to overlook by your family, perhaps a paid professional caregiver could be brought in who would be supervised by the family but take some of the work load of the daily ritual care.
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So, although you haven't actually said if your mom has any particular medical diagnoses, it sounds like she is partially blind, partially deaf and has a great deal of trouble walking, is that right? If as you say she is in and out of dementia and also in and out UTIs, these two things could be related. Urinary infections can cause dementia-like symptoms. I'm wondering why your family/siblings have not taken her for a neuro psych appointment to evaluate her level of impairment. Dementia patients rarely think there's anything wrong with them and a family that does nothing about getting the proper diagnosis is just enabling them to continue progressing with their illness, which unfortunately includes anger, ugliness and demanding behavior. I have found this to be particularly true of an elder parent who has always been controlling and this sounds to me like your mom.

Your description of your tasks when caring for her really seems like she needs full time care at a nursing home. You have to ask yourself why your siblings are doing it this way. The condition of your moms house cannot be healthy and I'm sure she has some awareness that leaving the house will mean leaving the cats, something I'm sure she does not want to get her head around. Other then further damaging the dysfunctional relationships that are already about as damaged as they can be, you are not well yourself, so what is your purpose for sticking around, subjecting yourself to unhealthy conditions, and not taking a stand to disagree with their position on how to take care of your mom?

I'm sure you're torn because you love your mom and want to do the right thing by her, and you think to some degree the right thing is what she wants. Well, she IS getting what she wants, but is it really the best thing for her? AND why is no one else, save yourself, standing up to her?

I'm afraid you may have to force your family's hand and either make them get a medical/psych evaluation OR walk away. If you feel you MUST walk away, before you do, please consider calling Adult Protective Services and start an investigation. It will make your mom and your family probably angry at you but your goal has to be the concern for and proper care of your mother in her elder years. Your family is scurrying about to try to take care of her daily needs and she is declining and not really being taken care of properly if truth be told.
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