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

Braida- such a beautiful story. Thanks for sharing. My mom is also a very cheary person and always tries to please. She doesn't like being left alone and that does make life hard but I just pray I can have the endurance and strength that you had. I don't want to put my mom in a home if I can help it:)

I became a caregiver for my dear Mom 8 years ago. At first I brought her to the city where I lived with my husband, and set her up in a nice independent living apartment close to me. But her memory was so bad, that she couldn't find her way to and from the dining facility without feeling she'd get lost, and I was running over to help her and keep her company many times a day. She was lonely there, couldn't make friends because she forgot who the people were, thus felt surrounded by strangers. That's when we moved her in with us. She had her own quarters within our home. She ate all of her meals with us, and was in our part of the house on and off all day. Things were pretty manageable for a couple of years. We could leave her on her own for a couple of hours, leaving notes to remind her of things, and she could call us at that point too. But it then got to the point where she felt fearful if we were gone, and sometimes forgot where we'd gone, and when we'd return, etc. So it got to the point where we couldn't leave her alone for even a small period of time. We felt trapped too, like others have mentioned, because we couldn't do anything spontaneous, and had to arrange for sitters if we wanted to go out alone or to a function. Otherwise, Mom went everywhere we went. Very fortunately, she was a very sweet and fun person to be around. She had a great sense of humor, and a desire to please us, and not be problem to us. She was always thankful and grateful for all we did for her, and mentioned it often. She had coronary issues, and the last month of her life, she began having more problems, and seemed to go downhill somewhat rapidly. Her walking became more unsteady, and she had spells of angina requiring nitro pills. She had a couple of instances where we had to have her ambulanced to the ER, just the last week of her life. She died at home just a month ago, and I was not ready for it. It's hard to put into words how much I miss her sweet, childlike presence. She was the type of Mother who gave unconditionally to her children (there were four of us) but I was the only caregiver. The others lived out of state, and saw her about once a year. Because of the close relationship I always had with her, I couldn't think of plunking her in a care facility, but wanted to care for her in our home so she could be surrounded by her family and people who knew and loved her, rather than strangers. (even though I know many caregiver strangers are kind and loving.) The last year or so was difficult in many many ways, with lack of sleep, sometimes loss of patience, and certainly loss of our lives and freedom, but there was also much joy and a great companionship....almost comparable to the type of love that a beloved pet gives to someone....absolutely unconditional and she was always just happy to be around us!! She loved to do the most simple things, just trips to the bank, the store, the doctor, and such. She was my sweet lovable best buddy. And I miss her every day. The loss is deep. I never regret for a minute the time and love I gave to her, because she deserved every minute of her. I actually regret things that I felt I could've done better, which I suppose is just human nature after such a loss. I would always recommend caregiving of a beloved parent in one's home, or their home, if at all possible, because although I can't minimize the sacrifice and hardship, I believe from the bottom of my heart that it is worth it.

I had a long vent typed. It was cathartic. I deleted it, didn't want to offend anybody with my long winded complaining and cussing. I've found some things help in caregiving a little, some more. My dad is a self centered user sociopath, so it is very important to keep everything at a strict routine with him. This way I'm prepared for the insults and constant demands and name calling, making it easier to brush them off and not take so seriously, same with the spit and trash he throws on the floor for attention. Setting a strict routine also gives me time to call friends and stay in touch and do other things I enjoy, reading, crafts, exercise, nap, drink, run screaming through the house pulling my hair out.... just kidding, kind of.

Joking aside. I feel everyone's pain, it's a painful and thankless job being a caregiver. I just try to hang onto some normalcy in my life and some routine. I've lived long enough to know that nothing, good or bad lasts forever, it just doesn't, I know this will not last forever, and when this passes my life will be different again. Everyone should make some kind of plan for life after caregiving, keep it simple, like moving and where that would be and why. Fresh starts are a good thing, and living lean. Hang onto to the good friends through this, even with a phone call now and then, don't give up things you absolutely love.

Hugs.

My dad passed away in January of this year. My mom and dad had been married for 66 years. My mom took care of her mother 6 months of the year for almost 20 years when she was younger. She always told me she never wanted to be a burden to either my brother or myself. Sadly, my mom is not physically able to live alone and I took her into my home while my dad was sick in the hospital and she has been here since. It has definitely been an eye opener for me. She has some dementia, poor vision and nueropathy in her legs so requires the use of a walker. If not for the help of my two girls I don't think I could do this. My mom doesn't want to be left alone so if I want or need to go somewhere I have to take her with me or have one of my girls come over and sit with her. Thankfully, my husband has been very understanding. My mom is 90 and isn't bitter or mean. Always says please and thank you. I hope she always stays like this. I have read so many posts where that isn't the case. Somedays are hard and I get down and depressed. I wonder if I will ever have my life back again. Then other days I tell myself to cherish the time I have left with her. My brother only helps when it us convenient for him. I try not to get resentful but I am at times. Caregiving is the hardest thing I have ever done but I just can't put my mom in an Assisted Living place. She would just be lost. There might come a time where I have to do that and I am dreading the day. So for all of us caregivers I pray for strength, patience and peace of mind to get through this difficult time in our lives. God bless you all

A post from the "new" poster: hadenough and PrettyGood, I've been reading your posts and my heart is aching for you both. We will never understand why in our Universe does the body make it and the mind does not.

Spouse response ~ seems like many years ago, when the symptoms started my husband was in his mid 70's, me 58ish, I really saw no big changes in him it was very slow going at first, in my mind ( after two years of denial with me) I thought I read enough, took enough courses, listened enough, that I knew how each step would go, that worked fine for awhile, I could still go shopping we could still take vacations, then it seemed like all h*ll broke loose, the disease within my husbands body was getting too much to bear for me, and with no more being able to leave him alone, for the past two years, it seems sometimes like I can't even breath. It really got to me twice & ended with me having to be hospitalized. But once I was able to get myself together, things started becoming a bit easier to handle. My husband is now almost 84, very healthy except for the mental deteriation, I think the biggest setback during all of this his his one daughter, an RN 25 minutes from us, I thought I can do this with her knowledge & support, she would be the help we so desperately needed, but it was never to be! Now how do I feel? Positive, we are going to make it, love & caring & living in his world for now is the key ( along with a few choice meds.) If not we go to plan Z

I have been my Mother's caregiver for 3 years now in her home. My sibs visit maybe once a month even though they both live less than an hour away. I have always been close to my Mom and we enjoyed each others company so I thought it would work out OK. It has actually worked out wonderful for dear Mums. She no longer pays for anything (all of my savings is almost gone) and uses me as her personal assistant/slave/mom and little friend. I hate it. Her personality is pretty much gone and she just stares at me and follows me around. I feel totally abandoned by the other family members. What I do to keep my mental health is insist on respite. Because my sibs are so filled with guilt they can hardly say no to my getting 3 days off every other month. Not much is it? If I had to do this over I would have found a nice assisted living facility. That is not an option now as my Mom is totally happy in her home and has serious memory problems. Glad she and my sibs are at least happy - but it was at my expense.

Thought I would spend end of life years with the mom I love so much. I have, but not in the way I thought I would. Still love her so much, but when the mind goes, you lose what you cherish. But it is all worth it, she is still my mom and I love her.

I imagined both my parents would be dead before 90. Now, over 5 years later, they are STILL ALIVE. Modern medicine.
I imagined that everything would truly be Fair & Square, between the kids. Now, I see how the out-of-state kids are treated like Royalty, and I, the only local one, who does 24/7 caregiving, is treated like ordinary, even slavery.
I imagined that my parents money would be theirs alone. Now, I see my Sis writing checks on parents account several times a year, for her travel expenses to visit parents, and other things.....at the same time, I am most definitely NOT paid for my gas to drive back & forth to parents, to their doctors, to their shopping, to go pick up ice cream & deliver it to them, etc.
I imagined I would be so proud to be their caregiver, that they would really appreciate it. Now, I think I would rather be one of the out-of-state kids, who gets to live their own Life, on their own schedule, and when I feel like I have extra time for family visit--get Paid to get on a plane, sleep in nice hotel, and receive a little extra cash on the side, just because I'm one of the Royalty that out of state kids are!
I imagined that my out of state siblings would support me in being the On-Call 24/7 caregiver.....maybe send me a birthday card, or a gift certificate at Xmas....but instead, they never even call me, instead they mistrust me and grill my parents over what I am, or am not doing.
I imagined my parents would be able to understand and SEE what is really happening. Instead, Dad has worsening dementia, and Mom just does the helpless Female thing and claims she can't change anything that was set up 25 years ago.
I imagined that I Would Own MY Own Life. Instead, I have discovered that in order to Re-Gain My Own Life, I will have to deliver a crushing blow to my parents who depend on me, and further alienate my siblings.
I imagined that my parents might give me a little something extra, whether it is regard, or their coin collection, but Instead, Sis is claiming the coin collection, grandma's gold/diamond jewelry Brother, and then Sis wants me to accept an old used motor home as my share. They all "claim" that it is easier for me to take the big heavy items, since they live out of state they will take the small items.
I imagined everything would be Fair & Square. But in reality since I do not have the POA, the Executor, or the Trust, I have absolutely no say in what goes on, but I am still expected to set aside my Own Life to support my aging parents.

I wish I would have been firm with my mother when she started demanding to move in with me. I should have just said no. Now I am half-way into buying a condo for her to live in. She blithely informed me last week that she will not be paying me any rent. I told her she would have the proceeds from the sale of her townhouse for the rent. She told me she can't spend that money, that is her children's inheritance (my dead beat brother & sister).

I am one phone call away from cancelling the condo purchase.

My parents were both the elder siblings of their homes growing up...and each of them helped all of their siblings as they grew through the depression years. As my grandparents became elderly, my parents helped in any and every way possible, financially, emotionally, physically. My aunts and uncles, the folks whom my parents had helped through the years, also helped with the grands and so to be honest I did think I would have at least some type of emotional support. I never counted on anyone for anything else...and it was a good thing, because NO ONE for whom my parents were there have been here for my Mama. I knew it would be hard. I don't think I counted on how much I would resent all the loved ones who I respected so highly all my life. And as important as family is to me, I now can see that on down the road, if there is an on down the road, I am not so sure I want to maintain any of my family ties. I am disgusted by pretty much all of them. I have ONE cousin who does what she can to sit with Mama and her health is not good but she tries, God bless her. My sibling is such a long story I won't even go there. I have come to believe he surely must have other things going on in his life that he doesn't want us to know about and so he does nothing...and I can't change that...and don't even try anymore. I know Mama never wanted this for me. I do not begrudge doing it and believe she would never have been with us this long had I not moved home...amazingly she is getting stronger....at least it seems to me..and that is great....my body, on the other hand, is failing me...rapidly. never counted on that. I always thought I was "born to be a caregiver"...even our hospice nurses have told me that...born to do this....in a nutshell, guess I just never counted on the feeling of utter and total abandonment by pretty much everyone...also never counted on never getting to get away from this house at all...other than a quick run to the grocery...haven't been away from this house overnight in over two years...I'm working on some respite for that as we speak.

I too had to do that . I moved my mom at here in colorado to take care of her , because my cousin and stepsister which aren't blood related wanted to put her in a assisted living there and take her money. So my sister moved her out here to colorado to be with me. At first it was joyful, but then it became less joyful and now I have worked things out an d my son is helping me. She lives in her own apartment 12 minutes away. I dont regret doing it though. We do have fun times. She will be 91 next month.

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.

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.

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.💜

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.

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.

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.

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.

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.

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.

GIVING CARE TO ANOTHER....duh!