Original Only Daughter
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My caregiving days are over, but I do find myself looking back over the last 13 or 14 years of my life and what became a nightmare of dealing with a father with Alzheimer's (and a mother and extended family in complete denial) and my mother's health issues. Sometimes I still wake up from a nightmare where I'm reliving some of the things that occurred soaking wet with sweat, shaking, and sobbing. Because of this, I occasionally ask myself if I had the chance to turn the clock w-a-y back, would I do it all over again. Would I do some things differently? Would I simply throw my hands in the air, walk away from all the arguing, name calling, and threats by extended family instead of digging my heels in and trying to make the the best decisions I could while existing in the most insane and sleep-deprived world of criticism by lazy, good-for-nothing family and friends who did absolutely nothing to help but sure came forth with complaints over what they felt to be the error of my ways in how I handled things, and dump the entire elephant in the room square in the laps of those who did nothing but create misery for Mother and me?
I don't know. I really don't. I often wonder how things would have turned out if I had packed up enough clothes, underwear, and, most of all, adult diapers to last my dad about a week, put him in my car, and driven him over to my stupid uncle and aunt's home to hand him over to them for a period of time to get an idea of how the man they saw at noon certainly wasn't the violent monster he turned into at midnight practically every night from sundowning. Seriously, that's what I should have done when that uncle, my father's baby brother, got so angry at me for having him diagnosed and insisted that I was just throwing him away because I didn't love my father. About three days of my father's insanity at night, along with the constant refusal to wear Depends and the messes he created all over the house, and my aunt and uncle would have had a complete meltdown and brought him right back because they wouldn't have even tried to handle him. That would have been the best thing because they likely would have shut up then due to the fact they didn't want to get stuck helping to care for him. Anyway, I'm curious about how others who have finished their caregiving view their experiences and if there's anything they would redo, tweak, or do differently if given the chance. Please respond and let me know. Also, if you're right now deep in the trenches of caregiving and feeling like you are barely afloat without a life jacket, please post what you would love to be able to change, if you could. Thanks, everyone. I look forward to reading your posts.
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Original Only Daughter, Unlike so many people here I had very good parents. They weren't perfect, they were human. They gave to the community and supported their children. Their first grandchild was a boy, premature and a hole in his heart. He died. The second born had Cystic Fibrosis, she lived to the age of 13. Those were the children of their first born. The second child had a healthy daughter. I was a coward and had none. (Maybe I was smart since there was no test then). My parents supported all 3 of us through various mistakes, but always encouraged us not to quit on our own lives. They stayed independent until they were in their late 80s. Dad died of cancer at 87 (in home with hospice and a hired CG in addition to the help of us kids). Mom stayed semi independent in the home until she was 89. When her first born died, she took it hard and had a bad health spell, but recovered. For 5 years she needed 24/7. I told her that she would have to have outside help as well as me, that I had a home too and couldn't do 24/7. If she wanted to stay at home she would have to accept help. She wasn't an N, but she was going blind, losing her hearing, very arthritic, TIAs, and scared to change homes.
My surviving brother had a wife who wasn't well (knee replacements, cervical cancer) and a child in college and was self employed. I had a husband whose job covered our retirement and insurance and no kids. Bro took care of the financial end (Daddy did good planning so there was enough to work with). I did the hands on and supervision of her team. Bro figured that I could be paid what I got from my part time job. LOL, the job was 20 hours/week. I worked for Mom an average of 80 but it was something (minimum wage of 1969). Mom was sweet and grateful and funny. During this time I collected some of my favorite stories. It presented challenges I never imagined. Since I never had children, I really didn't have the experience of being totally responsible for another person. I learned about doctors, and prescriptions, hiring, firing, scheduling, bossing. Fighting insurance. All of it is coming in handy now. And after 5 very intense years of madness roller coasters and phenomenal learning curve, I learned to let go. When you ask if I would do it again? What can I say? I am that much older now, not sure if I have the endurance to do it again, at least not the same way, but I don't regret it at all. I learned, I grew, I grieved. I know a whole lot more about the stages of life and have a different perspective of my future. I know my circumstances didn't impose the burden that care giving dumps on many. I didn't suffer financially. Children didn't suffer. So different from the situations of many here. There are some current things going on that make me think MAYBE I am going to be my husband's CG. Knowing what I know, if that happens, I will work in what help I can manage. I suspect that what I have learned will not be wasted.
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Wow, I don't know what happened to what I just tried to post...but, here goes again. I don't think that I even, for a million dollars would like to live this life again. I was given life from my parents to live freely, my life as I choose. My oldest sister and I took care of my mother in 2008 until my sister just could not do it any longer. Which, in turn forced me into having to place my mother in the nursing home in Feb. 2009 that I had been working in for over 30 years. At this time, my father was in the mid stages of Alzheimer's disease/dementia. After placing my mother in the nursing home I was treated very nasty by some family members. As people with their heads screwed on logically would understand, you can't go to work and leave your sick and dying mother at home with nobody there to care for her. My mother passed away in the last few months of 2010. I am still caring for my father. I can not leave him alone, as he has and, will wander away from home. Most days, sundowner's syndrome happens after his first cup of coffee in the morning. He too, refuses to wear depends. He told me that he did not care if he was wet in the morning and, he don't like wearing them.... I know that his reasoning is broken and, he does not realize how much extra work is placed on me with all of the laundry but, that does not make life any easier for me. I do have a brother that comes to the rescue when I am running up the street behind my father as he is walking (away/towards) his house... me with cell phone in hand calling my brother to come and rescue me. My brother comes and takes our father for a ride around the city and, back home again. (anyone that has dealt with dementia will get this) The last time that I had 2 days to myself, a weekend away was last August....Thanks to my loving brother. I have health issues myself. I am no longer working in the healthcare field. God knows himself how much I loved my job. I have sustained an injury to my spine that ended my 33 year career in the nursing home that I dedicated my compassion to caregiving. What kind of a life does a sole caregiver have? This life of mine is not what I would call a normal life. I would trade places with anyone with a life of substance, a life worth living.
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Would I do it again? I wouldn't even do it now if there were any viable alternatives. Unfortunately, my mother left herself with few options. No money to pay for help, and mostly indifferent relationships with her 7 children. I think what would have happened if I had stayed up north instead of moving down to Florida to help her 2.5 years ago, but I know I would have been dragged down here or felt compelled to come. At the time, two of my sisters were already in Florida, but 2 hours away from my mother, and one sister was very ill (she's better now but still fragile) and the other sister's husband was dying (he has since died, but now her health is having lots of ups and downs). The younger, healthier siblings are all up north, and all still raising minor children.
My mother will have to deteriorate a lot more before she'll be eligible for Medicaid and a nursing home (and she'd be kicking and screaming, believe me). Right now she needs help with housework, driving, cooking, doctors appointments, and caring for her yard, her car, her dog and her computer. She shouldn't have any of those things (especially the dog, which is a special needs dog requiring lots of veterinary care and not housebroken) but she absolutely won't consider parting with them. A better question than whether you would do it again is: How would you avoid doing it again? What other arrangements could you have put in place that would have allowed you to step out of this role? Believe me, I'm all ears, because I'm still in it with no hope on the horizon yet.
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I'm one smack in the middle now with caregiving...and I'm not one who deals with "real" issues of dementia or terminal illness or nasty viscious personalities. Would I do it again? Not if I could go back and know then what I know now. It has taken years of gradual decline of my mom both physically and personality-wise for me to see both her and myself in a true light...how I unwittingly let her use me to the point where I've been so taken for granted, and I'd not seen how readily I let myself enable her to use me. Now the dynamics are such that she can't comprehend why I'm not acting like I use to. She can't change now. Maybe if I'd set boundaries way back things would have been a little less stressful, but I just didn't know back when it would have made a difference. I do know I will do my best not to put any of my family through this over me, and I do know now that I won't do it for my husband if he should decline...and I hope he won't do it for me, either. Becoming the person who loses their identity so someone else can live their life through me is just wrong, yet I'm currently trapped and only just finding the strength to start wiggling my way out of bondage. Run if you can, before the trap is sprung.
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How would I have avoided it? I would have put my foot down when I was told, "she's on her way out, it's only temporary"...the "temporary" lasted 6 years. Meanwhile, she kept her own house, which remained empty and had more than enough money for caregivers, which she refused to consider. She also had a son and two other daughters (local) who could have shared the responsibilities. But being a 'nice guy', it cost me a fortune and nearly cost me my sanity and marriage, from which we are still trying to recover. I've already told my two sons that I will NEVER move in with them (much to their relief), no matter what I have to do to avoid it. I will not put them in that position. Elders who think that their kids "owe" them this are selfish and nasty.
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My answer depends on whether we know what's to come. If I know nothing, yeah, we'd make the promise and lock ourselves down for over a decade. Who'd think things would go as they did.
If I knew, everything. I would've gone back to college while Son was little and she was well, and gotten a job that's not freaking retail. I would've made sure that she was in an assisted living apartment for most of those years, and in a SNF the last 4. Would I have still been her advocate, yes. She deserved a voice. And it's not that I didn't love her, or care, but I lost a lot of years. We buried MIL on Monday. Yesterday was my birthday. After my last miscarriage, the doctor told me my only option was fertility treatments. I found that I'm too old to have the large family I've prayed for for so long, I've set myself in a job field I detest because the schedule meshed with her needs. Someone told me I'm depressed because I lost my job, so to speak, as her caregiver. Maybe I'm depressed because I used my youth and chances to do it. Dillie
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As a lesson learned, Son will NOT be our caregiver, ever. He deserves the life and joy we didn't get to.
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My response is from a different angle. I did give up, I left. I had no sibling support at all, parents in denial, etc.
Would I choose that again? Yes. While it was heartbreaking to hear the train wrecks from afar, to hear the constant denial with NF and siblings, being there would have been worse. I was the kid with no voice, never had it, never would. I left them with their choices. I have no guilt about that. They chose to do what they did. I had watched poor choices/denial for over 4 1/2 years, in a state I hated and still do, I moved back to be the "good daughter" and after 4 years of being there and watching the insanity I found I had to save myself. Neither of my parents did any of this hands on care giving of their parents and they were perfectly fine with that, why shouldn't I feel the same? While I love/loved them, I let them live their life they way they chose. Their 1 yr. anniversary of their deaths is next week. Unlucky me I get 2 anniv. in one week. And all I want is Sidekick back.......
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I would do it again. I wish I could say that I have figured out a way that I would do it better, but I haven't.
I can't figure out much that I could have done different. We just do the best that we can with the information and support (or lack of support) that we have. That's all we can do.
I do my best. That's all I can do. I can't do any more and I wouldn't feel right doing any less.
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There's no way...anyone in their SANE mind would commit to going through what the OP went through---nor some of the other posters under her.
I can't imagine any DECENT parent who loves their children and in a SANE state of mind would want their children to suffer through that insanity. Elder patients need FULL-TIME care. No one person, least of all, a child in a subjective position would be able to handle all the needs of an aging parent with Alzheimer's, different disorders, sickness, etc. DON'T DO IT! Let those who are trained to handle this type of situation handle it. If not, then do the best you can, but do not MOVE IN with them. You will LIVE to regret it. Your life will be worthless---and you may very well end up sick and physically disabled yourself. Seniors get cranky, obstanent, stubborn, bad moods, incontinent, etc. You want to be around that? I love my mother more than anyone....but i think (hope) i love myself more. My mother told me in her sane mind this "take care of number 1."
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Jon S, I know what you are talking about. I worked in the nursing home for 33 years but, after my shift was done I punched the time clock and left. I got to leave there after my 8 hour shift was completed. Being a caregiver for a parent, you lose yourself, you have no life. You can't go anywhere if you wanted to.... you can't punch out, you're stuck in a 24/7 rut and, there seems to be no way out. You are doing and dealing with the same issues day in and day out. Yes, they do have their bad days, cranky, don't want to eat, don't want to wear depends, don't want you to shave them, we got to go to the store because we are almost out of milk....Dad... I don't feel like going so, we don't go. Forget about doing something for yourself...like, taking a shower, a bath, because you don't dare have someone with dementia out of your sight for less than a few seconds fearing that they will wander away or start the house on fire. So, you resort to a sponge bath. I'm already physically disabled and I am worried about my mental health; because, the life that I am living now, or may I say, the lack of my existence has, and will decline as I put other's needs before my own. Both of my parents loved my siblings and I unconditionally, and we loved them likewise. They raised a large family and, did not have the means for any kind of eldercare plan for their later years in life. I never married, I never left the home that I was brought up in. I guess that it was all up to me to deal with what ever came down the pike. If I knew then what I know now, things would certainly be different. I am the only one of many siblings that has suffered the failure to launch, to go out into the world and live a normal life. I guess that I am, by nature, a born to be people pleaser. The time has come for me to put my life on the front burner. I need to please myself. I need my life back. I want to do what I want, when I want. I want to go where I want to go, when I want to go. I want to have the freedom to do what normal people do. To live what is left to my life as I wish. Most of all, I wish that I could just be a daughter to my father, not his caregiver. That's how it should be. Now that's normal!
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Absolutely, positively NOT. And I didn't do hands-on caregiving - if I had, I would have been suicidal. I have been an unpaid elder care manager for two extremely difficult parents - an N mother and enabler father - with huge issues, who were in complete denial and had done nothing to plan for their old age. I was relentlessly FOG'd (and, I realize now, manipulated) by my much-older sister into taking on the responsibility, which required moving my parents 1,000 miles to live near me in my new location where I hadn't lived long enough to make close friends yet and had no other family and no support system. It was the worst decision of my life. My marriage, kids, and finances were severely impacted, while my sister went on with her life, rarely visiting - and her rare visits caused chaos because she would try to bully my parents which made them even more difficult. I lost almost the entire fifth decade of my life. Everything I had hoped to accomplish by this stage of my life is lost forever. With 20-20 hindsight, I realize that my reasons for taking on the responsibility were faulty. I was brainwashed. I thought I owed it to my sister because she had no life as a teenager as a result of always having to babysit me. Hello, like that was my fault? And because I had a husband and she was a widow. Hello, again, like that was my fault? Her kids were grown. She had no one to take care of but herself. I had a family to take care of! My sister moved far, far away when I was 14 years old. When she started her campaign that "we" had to " do something!" about my parents (without offering an idea of her own about what that "something" should be), she had been living far away, with limited contact, her entire adult life - 36 years. I had only been living far away for 9 years. So for 27 years, I was the one who spent every holiday, birthday, Father's Day, Mother's Day, etc., with our parents, while she only had to send cards/gifts and make a phone call. She visited them once or twice a year - sometimes not at all for years, depending on where she was living - and only when it was convenient for her. I realize now that the Fear she incited in me about what would happen if "we" didn't "do something" was really her fear about how it would impact her. She was living within driving distance. She would have been the one most impacted by a train wreck because she'd have to be the first one there to pick up the pieces. And the Obligation and Guilt were hers, not mine. Two years ago, when I finally realized that I have spent my entire life doing what Big Sis tells me to (or manipulates me into doing) and it had to end, I started setting boundaries. I started saying No. And ever since, she's played the victim - I'm a horrible sister who has hurt her so much, because I don't agree to do whatever she says without question. One conversation was really revealing. While giving me the "how you have hurt me" speech, she said, "I thought we were working well together until I couldn't get you to --" and she cut herself off. That's right, she can no longer "get me" to do her bidding. In another conversation she tried to tell me that it would have been "so much worse" if I hadn't moved my parents to be near me. Sure, it would have been worse. For her. My father is now deceased and my mother is in AL. I still spend hours each week on her finances and paperwork. And when she's gone, I doubt I'll have any relationship with my sister. I realize that I don't even like her. So, no, I wouldn't do it again. I wish I could turn the clock back and stand up to my sister and tell her if she thinks someone should "do something," then she should go ahead and do it.