How has caregiving changed your views of life and aging?

I remember my Dad saying to me "your Mom and I didn't expect to live this long", thus probably the reason they didn't plan where to live as they aged... their house was becoming dangerous. Seriously? Ninety plus and dealing with stairs, a yard, shoveling snow, etc.... [sigh]

Thankfully my parents did save for those "rainy days" but they wouldn't blow the dust off their wallets to pay for things that would have made life so much easier for the both of them, and less stress for me.

It is very wrong for the elder to not plan ahead for their elder years! My mother widowed early at age 48, but never remarried because she wanted "to keep it the same for you KIDS- my brother 66 and married with family and myself 70 married with grown daughter married with family." What is wrong with your head, mother i wanted to say?!?!

I understand what you're saying, mylifematters. My dad passed away at 76, and Mom had 1 good year after he passed, where I was able to take her places, travel with her, take her out to eat and she was generally doing pretty well. In fact, through diet and a small amount of exercise every day, we managed to improve her health, lowering her cholesterol and her weight. Unfortunately, it was too late - a lifetime of damage could not be reversed. She only made it 3 years after Dad passed away, and she also passed at age 76.
I think what did it for her was seeing so many people pass away ahead of her. Dad passed away, then his brother 9 months later, whom my mother always loved very much, such a sweet man. Then Dad's sister passed away - Mom had a love-hate relationship with her their entire lives. Mom loved her, but my aunt was a very odd woman and had some odd ways about her - she could treat you lovingly one minute and turn right around and cut you down the next - and be sure to tell everyone about it. When my aunt passed away, it was kind of the last straw for Mom. She fully realized she was the last of their generation in our family, and I think that hit her very hard. She passed away a little over a month after my aunt.

Tinyblu I just want to say, that is exactly how I feel. Exactly. Almost every word described me. Just change the word "father" to "mother" and that could very well be my rant. Thank you.

mylifematters, you touched on something that I think of so much. You said it so well. My mother has now outlived everyone in her family. People tell me I'm lucky. I know they can't honestly believe that when they see her.

You know, it's awful when you know someone whose old 75-90 year old parent just dies suddenly after a short illness and you are still caring for a parent after many years with no relief and instead  of feeling sympathy for them you experience envy. Losing a parent is hard, I have lost one already, he was 73, but having one live on and on with no quality of life for either them or you is something you can't even begin to try to understand when they should not be alive. They aren't living, just existing. I'm not saying that every life doesn't count, it just doesn't make sense to see 80-90 year old parents living on their own and not depending or draining their children and then seeing all of us dealing with a hard reality that touches only those with sick, disabled parents. I, for one, don't get it.

ikuone - your experience unfortunately mirrors that of many others here. One of the things new caregivers are most unprepared for is the discovery of how long elders can actually survive in an impaired and dependent state. Most of us go into it thinking it will be a few years at most, and many are shocked when the years go on and the elder becomes increasingly disabled and needs ever-increasing amounts of help but otherwise remains healthy and in no danger of dying.

My mother began having serious mobility and balance problems in her late 70s, and she also had cardiovascular disease, diabetes, high blood pressure, arthritis and other various ailments. I could not imagine she would live much past the age of 80, since she seemed in poor health even for someone her age. Now she is near 86, and she is weaker and more unstable and needs more help than ever, but does not seem in any danger of dying. I almost want to slit my wrists when I hear of parents living into their mid and late 90s. This is not what I signed up for, at all!!!

My mom lived on her on until she was 90 and then she fell and broke her wrist. She was very frail and thin at the time and moved in we me and my family. At the time the plan was for her to spend winters with me and then move back to her home for the summers. Unfortunately she was never strong enough to live on her own. In the beginning I thought it would be just for a few years . . . I never dreamed it would the 6 years we've been at it and counting. What's more frightening is her health is great other than because of arthritis she doesn't have the strength or ability to do anything for herself. She could easily live to be 100+ I feel like my life is over. This is NOT how I wanted to spend my life at 62. I wanted to travel the world with my husband, but instead I'm still working full time (I work from home), caregiving full time and my adult son still lives with us. I really hate my life and don't think I can do this much longer. I advise anyone who can to make sure you get an in-law suite or separate living arrangements if you take on caregiving. Having to share your space with a 96 year old sucks! I feel like I'm living in a nursing home.

Being the only caregiver for both my parents (87 & 91) has left me worn out, resentful and very depressed. I am 63, very healthy & feel my life is a waste. I can't get away from this mess. I have two siblings that do nothing as they live out of state. A visit would be nice.I need a break! My father is going to be placed in assisted living soon as he requires care that I can't give him . There goes their nest egg & any inheritance we might have gotten. I hope there will be enough for Mom to live on. This is no way for any of us to live. There is no quality to life right now for any of us. We are living too long. I couldn't do this to my children. It takes money to live a decent life in old age. ALOT of money. If you aren't rich, it won't be good. I seriously, do not want to live if I can't take care of myself within reason.

After being a caregiver to my 91 year old Mom who lives with me I am terrified of getting old (I'm 60). I miss dating men as all my time is spend taking care of my Mom.

Also, watching my Mom's dementia progress makes me feel so very sad... My Mom used to be so sharp. She does have good days where she can be very, very funny but my outlook on the elderly has really changed and not in a good way...

freqflyer: LOL on the designated wheelchair driver!

My mom has always. Even healthy she now is 92, lives with me, and is very depressed and unhappy. My dad died when she was 72 and we thought she would give up on life but she embraced it and did things she always wanted to do. She took aikido at 72 and received her black belt at 75. She then got her second degree black. She then taught Akido for 12 years and wrote a book about it at 88 and published it herself. She was a prolific painter and had her paintings all over the us and now she doesn't know how to hold a paint brush. People are amazed at her abilities so late in life. Never thought she would have dementia, but she does and that disease has taken her. She has given up on life. If I could do what she did I would be happy. But because she did so much she is having a hard time losing control and her abilities. She is so sad. Oh and she has never took any medication except for a few vitamins. So due to never taking medication she won't now for her memory or depression. How's that for aging? Crazy right.

lsmiami, I also had saved for my retirement, big time.   But I was saving that money to use for travel and nice things.... that has all changed, now I am saving it for professional caregivers, Independent Living, Assisted Living, and a Nursing Home.   I never knew about any of this until I faced it with my own very elderly parents.

There goes my chance of buying a dune buggy and sunning myself on a beach at Malibu :P   That ship had sailed as I am pass the age where I could enjoy doing that.  Ok, maybe I will buy an used Jeep Wrangler.... hope I have the strength to take the doors off and enjoy a nice drive.   By the way, I am 70 years old, so don't be afraid of the 70's. 

I believe a person should be given the option not to do things to prolong life. A simple example is a person who refuses surgery, radiation, and chemo for a cancer when it has spread widely already. The person who opts for a speedy end should have that right without everyone pressuring him/her to do otherwise. I think of what some doctors and families do -- a person chooses not to pursue treatment, so the doctor says they must be depressed and prescribes an antidepressant. Surely the person would want to live if they weren't depressed. And the family works on them to pursue the cure, even when the cure is unlikely and will lower the quality of the remaining life. I personally don't want to do things to prolong my life. I don't want to take drugs for osteoporosis or to lower my cholesterol. Drugs for things like blood sugar, hypertension, or symptom relief would be fine with me, but please don't try to add years to my life if I don't feel good.

Mylifematters - I've always thought that we should have a choice, personally. It's probably not a popular opinion, but it's what I think. If I reach the age of 70+, my quality of life is almost zero and I'm miserable, in pain and can't take care of myself anymore, why shouldn't I have the option to (peacefully) end my life when I want to? We afford our pets - dogs, horses, cats, etc - more compassion and understanding than we do our elders, because "they're just animals".

Don't get me wrong - I'm not talking about someone going around willy-nilly killing off older people when they reach a certain age. I'm also not talking about someone with dementia who doesn't know what they're saying and asking to die. (Although whether they'd actually know what they're talking about would be difficult to judge.) I'm talking about a human being having the right to make the choice when they are of sound mind, but far less than sound body. Someone who has a terminal disease that has been determined to be fatal, incurable and is causing them great suffering, or their body has just reached the end of what it can do and is giving out - but is taking so long to do it that the person is suffering.

I've already determined that my children will not be providing care for me. I refuse to place them in the caregiver position. Sometime in the next year or so (I'm still relatively young to have been a caregiver, only in my 40s), I will set up arrangements with a trusted party that will take over guardianship and handle finances and place me in a facility when the time comes, if I am unable to place myself first. I hope to be in a position to place myself in assisted living with an option to go into nursing home care on the same property when the time comes, so no one else has to make that choice. If we're not allowed to make the choice of when to die, then at least I will have control over how my last years are spent.

I'll step off my soapbox now - and again, maybe it's not a popular opinion, but I do feel as human beings, we should at least have a choice. We don't have a choice of who we are born to - and for some of us, that's been the bane of our existence (born to dysfunctional or abusive parents and families) - I think we should at least have control over that final aspect of our lives.

Yes, it has. After caring for my dad till his passing, it makes me so afraid to get into my 80s and 90s. Trying to navigate the health care system. I have no kids. And even if I did, I don't know if I could expect them to take care of me. I think there would be too much anger and resentment about the responsibility. And too much heartache as well.

(continued) but it is not cheap

I learned to save for retirement and plan on assisted living, if I make it that far.
I have numerous elders in my family I can compare. Living home alone eventually becomes untenable. For some people that cutoff is 80 or younger, for some it is older. Of my family members who have stayed home, gone to small care "homes" or moved to assisted living, by FAR the one in AL has the highest quality of life and is the happiest....but i

My mother has 80 lives thanks to modern healthcare! Miserable life, she lives now in a nursing home. I can't understand not drawing a line at age 65 when a person is going fast physically and will live on in misery. Who are these people who want to live forever and prolong life? Every physician and every person advocating longer life should have to serve years of caregiving for a dependent elderly person before they prescribe treatments or offer advice on how to live longer. Not everyone will be healthy past 65, no matter what statistics say.

My wife and I care for her 87 year old mother. We are realizing that a life time of saving has been to fund nursing care in the future. What a kick in the a** that is. Of course people should pay their own way if they can but it still sucks. My MIL's dementia makes me question why in the world we all want to live as long as medical science can keep us alive these days. Doesn't seem to be quality years.

freqflyer: Oh my word, bladder cancer! I wish I could say I am surprised, but I am not . A similar thing happened to me when I had to suddenly put a halt to my life and move in with my mother, where she was living alone 400 miles away. I was going over everything in her house (she demanded to live alone), was legally blind, had A-Fib, CHF and very low blood pressure. In her file cabinet, while looking over her medical papers, I find one from a dermatologist that says she had skin cancer. I said "why didn't you tell me that you had skin cancer?" Her response=Oh, I don't have skin cancer." That was my late mother.
She sugar coated EVERYTHING, even the truth! Taking her to the doctor before I had to move in, the doctor would ask "Norma, what's wrong?" Her response "oh, nothing." I told her that she had to speak up, especially to the medical professional!!!! That fell on deaf ears!!!! Mother and I clashed because we were polar opposites!

Llamalover, my parents were the same way, health issues were hidden.   I remember one time taking my Mom to Urgent Care for whatever and the doctor was going over my Mom's recent medical history.... he mentioned bladder cancer.... say what???   That was the first time I heard about that.   He was surprised I didn't know.

We were just a family that kept quiet about our health.   I shouldn't complain, I never told my parents I had cancer while I was trying to help them out when they stopped driving.... [sigh]

Oldcodger: It didn't start out easy for me because my late mother never spoke up! If I hadn't discovered by accident that my mother had extremely low blood pressure, she wouldn't have brought it up!

I know this question was posted a year ago, but it was only a year ago that I brought my mom who has Alzheimers to live with me (January 2016). It's amazing to me that I NEVER thought about my mom having Alzheimer's, and this is even considering the fact that her older sister died of Alzheimer's. Talk about being in denial. I always thought I would move my mom in with me because she would be physically unable to manage living by herself. But just prior to moving her in, I began exploring what Alzheimer's could really be like and it was at that point that I began considering what the future would/could look like for me. I am almost 65, have one son and 3 grandchildren. I am extremely active and interact with women older/slightly younger than me that represent the new "senior citizen". I'm getting ready to have my mom go on to residential care because I am reaching the limits of what I can do for her. What this year long journey had done for me is to realistically look at what might be my own ending. And after reading some of the comments that were posted from fellow baby boomers, I am in strong agreement with some of the things that I've read: I am NOT going to be a slave to medications designed to keep me going. I am not overweight, don't eat pork or beef and fried foods and am basically pretty good with what i eat. I am less active since I took my mom in to live with me (for obvious reasons) but I am no couch potato. So I've decided that I am going to let the natural progression of my body decide when it is time for me to exit. So that means that with a slightly elevated cholesterol, I'm going to be okay about that and just live my life. I will do everything I naturally can to live in a healthy way, but I am not willing to supplement every part of me with medication( which may have side effects) just to have a few more years. My adult son is good and his children are well taken care of, so I get to focus on what is going to be the most meaningful for me. I have lived my life and shared my view with my son and grandchildren so they all know what I am about. And they will know I have lived and will die by what's important to me. That's been the gift of taking care of my mom. She never considered that and therefor never got to state a choice for her living with Alzheimer's. I am one one of 4 children and so the process has not been easy, with everyone thinking what my mom would want to do. So talk to your kids--let them know what you would want and don't leave them to decide. It's way too painful with all the emotions surrounding each child's relationship with their parents. I don't want to live forever and bury everyone I know, therefore making choices is a lot easier for me.

Guess there is a "designated" wheelchair and/or rolling walker attendant.

Can't stop drinking or playing bingo or both?

Windyridge: "Buzzed bingo?" What happens when you can't stop?

I agree oldcodger, but wanted to add a few points to the ones you made. It also depends on the relationship is/was between the caregiver and care recipient, and how easy or difficult the care recipient makes it. Taking care of someone who is unreasonable, demanding and ungrateful is never fun for anyone. Taking care of a person you would not have chosen to associate with if they were not a family member - that's a recipe for misery.

But I totally agree with your basic premise. I remember one guy who wrote a book about how we should become a nation of caregivers after he took in his demented Mom and cared for her until her death. Turns out he had 24/7 paid nursing care for her. Easy for him to say we should all be doing it - he wasn't doing the hard gritty full-time work that many with fewer resources have to do!

Just an added thought. I think care giving has different effects on different people due to the variances in the amount of work involved, the health issues being dealt with, the length of time it goes on, and the amount of HELP or LACK thereof the care giver gets.

The ones who 'glow' about how great it is/was to care for mom/pop, etc. are usually fortunate enough to have plenty of funds, plenty of help and perhaps a 'shorter overall experience.'

It is never easy for anyone to care for another who is in declining health and who will never get better - but definitely a lot harder for some than for others and therefore a greater negative toll on their lives. I

I think caring for those with cognitive or personality disorders has got to be some of the hardest to deal with. But, I laud ALL CARE GIVERS EVERYWHERE - they are a special breed - usually the kindest hearted of the bunch. Hang in there. You will be changed forever. Hopefully you survive and come through it a better person and not completely burnt out beyond recognition. I pray for all care givers each night. They need all the help they can get. And often, they get NONE. :0/

My mom passed away prior to my pop the next year. She died of Dementia. I was lucky because he could break me ever so often towards the end for an hour or so once a week so I could run down to Kaiser where they would have a speaker about different things to make life easier. It's very frustrating at times without a doubt, but these classes showed us how to lift people without hurting yourself. But most of all explained things so you could sort of get into their frame of mind to understand them better. For instance, they were not sure at the time if people with dementia would get combative showering that they may not be certain if the water might hurt them by scalding them. Just that little thing made shower time so much easier. I'd hold my mom with one hand while she was outside of the tub and put my other arm into the shower and would say see it's not going to hurt you. She'd normally calm down and go willingly then. When you think about it... how can anyone know what's running through a person's head and terrifying them or something because they can't tell you or anyone anymore. Just that little thing opened my mind up to this concept. You can't know what's going on inside but it's better to try and understand it because it makes the battles so much easier and the back aches. My pop wasn't at all patient, but when he'd get angry and start yelling at my mom and start crying I'd take him aside and just say quietly to him do you think she's doing this on purpose..no.. just go give her a hug pop she's going through a battle we can't understand. It became so much easier to encourage the calm just trying to think about what's going on inside their heads. Support Groups. or better yet classes if you can take an hour or so and if the hospital provides them. Kaiser's was a huge help to me in just 1hr a week. Take a deep breath and I found it helps so much to find out just things you'd like to know about your parent, what they liked to do when they were young, with mom recipes I could never get again after she passed. With my dad I wish I'd asked him more about his band in chicago before he went into WWII. Stories he was willing to tell. I miss them both so dearly.