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Ahead of time, thank you everyone for any responses. Sometimes I get so tied up in dad's care I can't get back on here for a while. Today is quiet.


Just watching the years go by as I take care of my dad, thinking what I can do different for my own future, I have two adult children, one is disabled, the other has been battling cancer off and on. I can't be a burden to anyone after this, I don't want to do that to anyone. Want to make up for the years of life I've missed, and definitely want to line out the elder years better than my parents did.

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W61ha13D, well for me I had to toss way my bucket list. I wanted to visit all of the U.S. Presidential Libraries. The stress from trying to help my parents who lived into their mid to late 90's, took a major toll on my health :(

My Dad was a sweetheart, easy going, open to suggestions, etc. My Mom was the opposite, refused caregivers, refused cleaning crews, refused to even consider downsizing, etc. They lived under their own roof, me under my own, but every time the phone rang I started to shake wondering who needed medical attention and/or who fell.

Due to the major sticker shock of aging, especially the cost of having professional caregivers [after my Mom had passed, Dad was eager to have caregivers help him].... then the sticker shock of Independent Living [Dad was ready to sell the house]... then Assisted Living/Memory Care... I now am holding hostage my retirement fund for those raining days. There were times when it was storming out there !!
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W61ha13D - I never knew how expensive it was to get old and sick and the stress it put on family. Now I do. I agree with you. I don't want to put the burden of caring on my children. They need to have their lives.

I was planning on opening college savings accounts for my kids, but I scrapped that plan. It's more important for my husband and I to save for our retirement. The children can work and pay for their college education. If really needed, they can apply for student loans and work to pay off. We, on the other hand, will run out of working years, and won't be able to fund for our own care if we don't save now.

I hope to not get Alz or dementia. But if by chance it happens, I don't want any medical interventions to prolong my life. That will be in clearly spelled out in my living will.

I am sorry about one of your children being disabled and the other having cancer. It must be very difficult for you as parent. How old is your dad? How is his health? Do you have any help?
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W61ha13D Jul 2019
Thanks for your response.  Dad moved in with me six years ago, I had a lot of caregiving experience before he moved in, otherwise I could not do it, he's been easier to take care of than my husband was do to my husbands illness. I know I'll be selling my house and scaling down, already made that decision. Dad likes it here though, so for now I won't.  I'll simplify everything as much as possible.  I can't pay any more for college either, just can't.
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I feel your upset. I never imaged my life in retirement, being a caretaker to my husband, who died 12 years ago, then my father, who died 9 years ago, then my cousin, who died 4 years ago, now...I am in a mess with my step-father, it never seems to end and I am tired, on top of all of those people I have a 94 year old mother who is a real problem. Their attitude was/is Let D handle it, it is just easier to die. I have my elder plan in place, and, I will handle it myself and not leave a mess for my brother.
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W61ha13D Jul 2019
I lost my husband 7 years ago, hugs to you.  It's hard enough when you lose your partner, much less everything else.
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Oh the things we wanted to do when we both retired.
Travel was a biggie.
Soon after I retired he was diagnosed with dementia.
Rather than travel I learned how to..
Redirect him when he had something on his mind.
I learned how to communicate with a man that became non verbal.
I learned that if he took off not to cancel the credit card because the police could track it if it was used.
I learned how to hide my car keys better
I learned how to change a brief while he was standing up
I learned how to use a Sit to Stand and a Hoyer Lift.
I learned how to make a bed with him in it
I learned how to change his tab briefs while he was in bed (and not get the sheets soiled)
I also learned...
No one will care for me the way I cared for him
I will not put anyone through what I went through.
I purchased Long Term Care Insurance. Hurts when I pay the bill every year but knowing I can stay in my house makes it easier.
I have discussed my wishes as to what interventions I want in a medical emergency and I have a Health POA and a POA for finances.
What I do now...
I live my life to the fullest (as best as I can)
I volunteer
I participate in Support Groups to pass on what I have learned.
I will answer a call from a friend at any time day or night, if they need me I am here for them .
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W61ha13D Jul 2019
I hear you.  I joined several Glioblastoma Groups when my husband passed.  Mom passed from breast cancer at 58, I took care of her, oldest daughter has Chiari malformation, unusual case but doing well now, several brain surgeries, youngest has cancer in remission, doing well.  I can't remember me though, I've been taking care of people for so long, I think only long term caregivers can understand. I made a room for myself in my own home that's my tiny little sanctuary, it helps.
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First of all nobody is a burden and I doubt anyone would see you as such. I'm sure you are an absolutely lovely human. :) I don't know how old are you, I'm in my late 40's and my mom passed recently. I was her caregiver for most of my life on and off. I had the same thought about being a burden. I am totally on my own, no kids, both parents gone and no-one to take care of me into my elder years.

Sure, plan for your retirement/elderly years using the knowledge you've gained but also plan for happiness.

I gave up a lot to take care of mom so I understand and I know what burnout feels like. When mom passed, it was devastating but I also realized I had the opportunity to do things differently for myself starting now and that is what I am doing. I am making my health my priority, planning to travel and am pursuing activities I love to do. I have the same plans for when I'm retired.

Please make sure you are taking care of yourself now, so important. Especially for when you are older. Do what you can now to be healthy, find a bit of happiness, rest and peace don't wait until then.
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I am the youngest child and my retirement plans haven't changed nearly as much as my life plans, not entirely due to caring for my parents. The children of my older brothers have been in my life since my teens. At 34, I decided to take a traveling job to have enough income to help the nephews through college. My plan if I had no children of my own to foster and/or adopt in my 40s, but then my nephew's marriage really went south. Before they split, I had their children a little over 75% of the time (that I could prove). His wife enjoyed a party life more than taking care of her young children. After separating from my nephew, she never had her own "home" preferring to live out of her car and crash with her latest boyfriend. When she settled on a main boyfriend, he had multiple DUI, aggravated assault and drug dealing convictions. My nephew's construction job meant he wasn't available for primary childcare of his then 5 year and 18 month old children and he also liked a social life. He got sole custody and I got primary childcare responsibilities, which I preferred to the children being neglected or exposed to the dangers of their mother's boyfriends. So in my 40s, I worked a full time demanding job (my dream job), helped my mother care for my father with vascular dementia, and took care of young children. As I turned 50 (parents in their 80s), things became more challenging; Dad's dementia worsened, Mom's health started to fail and my older brother decided he had to take over and make sure everything my parents owned was transferred to him (for his grandchildren, the only "real" grandchildren since our other brother adopted). I left my dream job (transfer to less demanding role) about a year after a hospitalization to reduce stress as I had some health issues of my own. Merger changes at my company put a tin god as my immediate manager who was really frustrated by my "work at home" employment; company policy required manager's approval to work remotely but I had working from home included in my offer letter so it wasn't his choice, which he only found out after he "required" me to report to the office and HR told him he couldn't do that. I eventually took a 12 month unpaid leave so I could deal with my parent's issues, take care of the kids and my own health. That's when I reworked my life: relocated closer to my nephew, moved Mom in with me, gained guardianship of my father, moved him into MC, and sold my parents home and rental properties to fund Dad's care. While I was on leave taking care of this stuff, my company's merger outsourced my department and although I was offered a good job in another department, I decided to move on. The children are now 11 and 15 and have moved back into their father's next door house (still show up here for a night or a week when Dad is working out of town and there's contention with step-mother). So here I am, 55, recently retired on disability, taking care of Mom with MCI and limited mobility and trying to settle Dad's limited estate while my estranged brother tries to get a probate judge to overrule the guardianship judge and declare certain property to have been solely Dad's (which Dad could have then given to estranged brother) instead of a joint asset my mother inherited on Dad's death.

Mom has 5-10 years left and even though I must be responsible for her 24/7 I am blessed with enough backup care givers in the extended family and enough respite hours during the week to still have a limited life. My hope is that after the care giving responsibilities are done, I can take a year to "rest" and then my own health will allow me travel a bit, maybe with one of those kids I once took care of as a companion. I live in God's country and I will enjoy my retirement even without travel, visiting relatives and attending local events. I might even do some emergency foster care, as there is a great need of it today.
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To add to my previous post.... anytime today's society feels we, the grown child, should be the primary caregiver of one's parents because that is how it was done for generations. We need to stop and look how caring for one's parent(s) was done generations ago.

When I look back into my family tree, back in the 1800's and early 1900's it wasn't unusual in my tree for parents to have 10 to 17 children, and their grown children to have a dozen children themselves. That's a lot of potato salad at family gatherings. It was just the norm for those who lived in rural areas.

Thus, there were always grown children and grandchildren to help out their aging parents/grandparents. And in my tree, it was the norm to live to be into one's late 80's, 90's, and 100's even back then.

Thus, society should feel that one or two grown children in today's world should be doing all the caring that a dozen of children were doing back then??

When my Dad's Mom needed help in her 90's, she had living nearby two sons, their wives, and a gaggle of grown grandchildren. So she had a village to help. I told my parents, that I was trying to do what all 15 people were doing. My parents weren't hands-on as they lived out of State, thus had no idea what was involved. I was trying to convince them [now in their 90's] I was exhausted.

I remember back at work when I was grumbling about driving my parents all over hill and dale, when one co-worker said I have to remember my parents had driven me all over hill and dale when I was child. I remarked that was true, BUT my parents weren't in their late 60's when I was a child, big difference.
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Another thing that I learned from living it and reading what others go through on this site is that people should think twice, three times or more before moving their parents in with them, especially if the parents are narcissistic. Major mistake that ruins lives, destroys marriages, and more.

The saying that one mother can take care of 5 (or some high number) children, but her 5 children can't take care of one mother is true. It is NOT supposed to cause guilt for the children as some people take it. It is to say that taking care of one mother is a MUCH MORE difficult job than raising a bunch of kids. And that caring for a aging parent will require much more than her grown children can give.

A few generations ago, old people got sick and died soon after. Now, they get sick and linger on and on and on and on thanks to the miracle medical interventions.
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