What perceptions did you have in the beginning and how do you feel about it now?

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What is caregiving?


The financial impact on working caregivers who leave the labor force due to caregiving demands can be severe. A recent study suggests that family
caregivers age 50 and older who leave the workforce to care for a parent lose, on average, nearly $304,000 in wages.
Caregiving's Little Secret Long-term care has a secret. So do some caregivers. The secret is that some caregivers are on the receiving end of physical, emotional, psychological and/or verbal abuse from elderly parents or spouses. Although difficult to fathom, some caregivers are abused.
Elder Predators
Historically, regulatory scrutiny and practice focuses on abuse of the elderly, whether in long-term care or in residential settings. Such scrutiny is very much needed as many high-profile elder abuse stories have proven. Typically, unsuspecting and socially vulnerable elders have been subjected to predators, including financial sharks, gigolos, family leeches and unethical vendors.
Vulnerable Caregivers
While there is no doubt that some elders are abused in many ways, some individuals in our society seem to be less inclined to believe that sometimes the abuser may be the chronically ill elder.Abusers Come From All Walks of Life
Abusive behaviors are not limited to elderly patients. Any psychiatric technician or nurse could share stories of abusive patients of all ages. These are patients who spit, throw objects, scream at those trying to assist them or at other patients, make unreasonable demands, and defy staff and/or family caregivers at every turn.
Caregivers Must Somehow Manage
There are no simple answers to the dilemma of elders who abuse their caregivers. Caregivers' voices need to be heard when a caregiver feels abused by an elder. Such allegations should be taken seriously.
If you are a primary caregiver to an elder whom you perceive to be abusive in any way, here are a few thoughts.
Share your frustration and concern with someone you trust, whether in a caregiver support group, your doctor or your elder's physician, or a representative from your state's aging agency.
If your elder has been diagnosed with Alzheimer's, contact the Alzheimer's Foundation 24/7 hotline. A counselor should be available to assist you and offer helpful advice. Call (800) 272-3900.
If Alzheimer's is not the culprit, there still may be an underlying medical or psychological disease process, including stroke or personality disorders, so be sure to let your elder's doctor know what is happening.
If abuse ever rises to the level of an emergency, consider whether to call EMS for assistance, be it for yourself, and/or your elder's safety.
Your elder may be better off in an appropriate long-term care facility where staff is trained to handle similar resident profiles. Is assisted living an appropriate housing alternative for your elder? If the answer is yes, contact a geriatric social worker or your state's aging agency to help you get started.
You do not have to love someone to assist or care for the person. If not love, think compassion and tolerance.
Don't be afraid to invite other family members or visitors over. Random visits may be more helpful to you if you are an abused caregiver. A well-timed visit may expose strained relationships and yield possible evidence of bodily assault to the caregiver.Most importantly, as the song says, there comes a time to know when to fold 'em and when to walk away.

Juddhabuddhaboo, in the beginning, I thought seeing my mother of 90 was a pitiful thing.. her begging to leave that place and go home. So a few of her kids took her home, so she could die at home. We felt that we had honored her "last wishes" by allowing her that. We all felt obliged to take care of her; and did so with some happiness and satisfaction.
But, once home, and as the months stretched out into years and her "old abusive ways" quickly returned, so did her favorite son. Her "rescuers" became her "slaves" once again.. and her favorite barked orders to us and criticized. (Yes, I came from a very dysfunctional home!).
So the "joy of helping" became a drudgery and a reminder of past hurts. Her favorite was appointed POA and executor, etc. One by one he drove us all crazy with his power-striving and abuse... and she encouraged it. Now, everyone has gone except him and he seeks revenge because we "abandoned our mother". The "change" from how we all "felt" to how we "now feel" is from "innocent caregivers" to "angry, 'abused' old children".... AGAIN! Change such as this happens when a "leech with an axe to grind" assumes power.
You become involved in caregiving to meet a need and to try to keep the situation from spiraling out of control. There is little forethought about the inevitability of increasing needs and increasing burden. We make too many assumptions about the "others" who we "expect" to have a level of commitment similar to ours.

P.S. Ohmoondance, I think Juddhabuddhaboo's question was rhetorical. He or she was looking for the less-obvious characteristics of caregiving that we all discover through experience. It's good to know what you're getting into beforehand. That's why I wrote "What to Do about Mama?--so others can have some foresight based on the hindsight of other caregivers. Isn't that what AgingCare.com is all about?
Barbara M.
So much of it is emotional for the caregiver and then the physical starts to creep up. Before you know it you're wrapped up in a world you never thought existed. Then, on top of everything else most adult 'children' or spouses being the one who feels 'guilty' even though other people say not to... Seems like nothing is ever 'good' enough with the very little (if any) help we can get.
More so, how does a caregiver live with themselves after such a life-changing experience? It's easy for others to say cliché's such as "everything will be alright" or "things will get better"... And, while every caregiver situation is [very] different it's the caregiver who struggles to get back to some kind of 'normal' they used to have... if it is at all possible.
My initial perceptions were shaped by the rainbow fantasies being passed around in the general culture, ie people getting older and wiser, the approach to death leading to greater spirituality etc. One certainly would like to believe this stuff but it's not so for most people. There are exceptions but they are regarded as amazing and unusual. The cultural fantasy of old age can con the naive into caregiving. It suits society to have relatives do this for free without giving the slightest support.

My views on caregiving have certainly changed as I became better acquainted with my current mother. She is not improving with age. When I see her, I feel like I've been time warped back to age 10. The fantasies are rapidly falling away, fortunately before I moved in, as she would like. Just reading this site changes my views as well. The powers-that-be had better close this site if they want those unpaid, naive caregivers safely trapped.
You jump in with both feet with the idea you are saving someone, in my case my mother. You soon find out that instead of helping you are both drowning in a sea of issues way over your head. I think we are all in superman or woman mode when we start but the reality of 24,7,365 is way beyond our super powers. If anyone is reading this and thinking about becoming a full time care giver really research what is BEST for BOTH of you. Your sacrifice will be huge and you must have plans in place for when enough is enough. Love doesn't get you through....it takes so much more.💜
I am/have experienced so much of what you all are talking about regarding the dark side of caregiving. There is the sunny side too; the silver linings. But the realities of overwhelming guilt, lost wages, strain on marriage and on we boomer caregivers' own dwindling creative/healthy years left are stark. I only wish all this is motivation for change in healthcare laws in this country. That is going to take replacing the "for profit" model of healthcare with something which provides quality affordable for elders so that adult children can live their lives too. This means that we the citizens must be willing to discuss a taboo subject in the U.S.: raising taxes. There, I've said the bad word. The reason Western Europe and Canada have benefits and more services to assist the elderly and caregivers is because the citizens there are willing to pay more taxes to fund such services. No free lunch. I would be so willing to pay more taxes if I was assured it meant "free" personal home services for my 93 yr old father which would allow him to remain in his own home indefinitely.
I had zero perception. I was totally clueless about caregiving, never even thought about it because my parents never needed to care for their own parents, and I didn't have anyone in my peer group doing caregiving. It was so foreign to me.

Never in my mind did I ever think I would lose a job I really loved because I had taken off too much time to help my parents, and all I was doing is driving them where ever they needed to go. That was a real eye opener for me.

This website has also been a real eye opener to me for the future as my parents are aging quickly, and still in their own home. Got to get them to an Elder Law attorney to upstate their wills. I need to update mine also.

I gave my parents a suggestion of moving into a fabulous retirement community that offers transportation, a ton of stuff they would enjoy, and new people to meet.... but my parents refused to move. Well, that was THEIR choice to refuse to move, so now they need to live with THEIR choice.

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