How has caregiving changed your views of life and aging?

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.

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

(continued) but it is not cheap

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.

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.

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.

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. 

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.

freqflyer: LOL on the designated wheelchair driver!

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...

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.

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.

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!!!

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.

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.

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.

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.

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 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.

Another good story-my late mother had a friend living in an AL where wine was served to her daily! Say what??!! Plus my mother's more than demented mind said llamas were allowed in! Say what??!!

I want to go to that AL. I don't like wine much, but llamas are cool.

JessieBelle: I love llamas, too, as you can see by my screen name. My mother got a lot of things wrong, but even if told it was wrong, there was nothing changing it, in her mind! The llamas were kept in a barn and weren't allowed in to a sanitary building, of course!

In short, after taking care of my mom who has dementia for almost eighteen years, I become an agnostic, an antinatalist (albeit a soft one) and I'm in favour of euthanasia and assisted suicide for dignified death.

Of course I still congratulate friends and relatives who just had a child or grandchild. What can I say? Children are always considered to be a blessing. To say otherwise would only make me loose a few friends that I still have. I know it sounds like hypocrisy, but with my endangered social life, I have to do everything that I can to preserve what is left of it.

As for euthanasia and assisted suicide, it's still illegal here where I live. And as far as I can see, it won't be legalized in the near future.

Today I euthanized my dog, my baby, due to intractable pain from cervical/neck cancer and degenerative disc disease. She was peacefully euthanized in our home, in her favorite spot which is on a bed next to my mother's bed. After taking care of my now deceased father and current elderly mother - who has no quality of life - not.one.bit - but isn't a hospice case yet because she has the body and will of an endless rechargeable Energizer Battery Bunny - I firmly believe Death With Dignity should be a national law. When you get to the point of no quality of life - you are an ongoing paycheck for the healthcare industry while remaining family and friends are in pain from seeing your pain.

I'm turning 65 soon. I've been here 7 years now taking care of my parents. My father is gone, but I'm realizing that my mother may live several more years. I think about my cousin who took care of her mother. My cousin turned 70 before her mother died. My cousin has had a hard time putting a life back together for herself. She was divorced and her health was bad. Her mother left no inheritance, so there was nothing.

Today we had some visitors -- a woman with her two children. While her son was playing outside he decided to take the rocks off of the erosion wall on our creek bank and throw them into the concrete water canal. By the time we got out there, he had a large part of the wall thrown in. The canal is about 12 feet deep with a fence along it. There's no way to get the rocks back without risking life and limb. He was just a kid, so he didn't know better. But I looked at the rocks and knew it was just another hardship on me. When they left, I went into the kitchen to cook dinner for my mother. I was in despair, thinking about how to get all those big rocks out of the channel and knowing I couldn't. It's against the law, too, but that's not what I'm concerned with.

Yesterday I cleaned and straightened my mother's room, which is quite a feat. Tonight she was very upset with me because I had hung her belts in the right place. Why, I don't know. None of them fit her, anyway. She told me to stay out of her room. I told her I couldn't do that -- that someone had to clean it.

I told her what was in my heart -- that it was time for me to be getting back to my own life. I don't even think she heard me, or at least she considered it like background noise. I see how my cousin's life turned out, though, and know that I have to take care of myself. I don't see any point in going through this any longer -- donating my life so she can sit in her pajamas watching TV all day. It takes away any meaning from my own life and I deserve much more than living alone with a woman who doesn't really see me as a daughter. I don't want to spend my last years on earth being a domestic servant to someone who doesn't care at all about me. I'm sorry that I donated such a large part of my life already. It's sad that families can be like this.

I've seen too much in the nursing home my Mom is currently in and in others... There is a memory care facility next door, and if those residents have medical needs, they're transferred to the intermed. nursing home Mom is in... If their medical issues don't resolve so they can return to the first facility, they stay where Mom is. I truly feel sorry for those folks, and sorrier for their loved ones, but (I hope I'm offending anyone) their presence all around my Mom - who is still for the most part cognizant - adds an extra layer of misery to her life. I see their empty eyes, their actions, their noises, and know I'd never want to live that way. Then there are other residents, more cognizant, who are stuck in the facility because they can't live independently at home or in another situation... Amputees, stroke victims, etc., on and on... They are all at the mercy of CNA's, and while some are compassionate and committed, many are not. Their job is not fun, it's hard and under nasty conditions, and with low pay, so it's not surprising that many are only there to pay their bills, and do the minimum they have to.The facility Mom is in tries - they are better than most places I think - but there are still mistakes, still unpleasant issues. Smells... lack of privacy and personal dignity - boredom... I'm sorry - maybe I'm just selfish - but I simply don't plan to be stuck in a tiny room with a stranger roommate, calling someone to take me to the toilet and wipe my butt, shower me, dress me (maybe in my own clothing and maybe not...), eating horrid institution food, and wheeling endlessly up and down the same halls in a wheelchair trying to find something worthwhile to live for and keep my mind active... I can only hope my choice not to live that way remains possible for me to decide how - and how long - I wish to live.

Just a comment concerning the many posts that people talk about elders not planning ahead - saving money - etc. The reality is that it's not often even possible to save enough to pay for care if you live long enough... My Mom is 97, saved all her life (depression "baby" - you HAVE to have a nest egg!). She deprived herself of fun and joy - "couldn't afford to travel" "couldn't afford to go out", etc. - She had a decent annuity from her and my Dad's Federal retirements, but she HAD TO SAVE! All that accomplished was that when she fell and broke her hip and wrist, she had to pay much of the resulting expenses out of pocket. Her health insurance didn't cover a lot of the expenses (Medivans, for example, to transport patients to doctors' visits or other medical appointments, aren't covered at all by insurance. Ambulances are only partially covered). Care homes - rehab/skilled nursing/etc. - aren't covered by insurance. She contracted MRSA in the hospital in a surgical wound, so SHE had to pay to stay for a month in a grim facility that could handle daily infusions of strong antibiotics through a "pic" line in her arm - $13,000 for that month, plus $900 for medications. Somehow, I feel the hospital where she acquired the infection should have had some responsibility for treatment? Instead, they simply charged her through the nose for the extra time she had to stay there before being discharged to the "home". Co-pays and deductibles of thousands of dollars... So, her hard-saved "nest egg" went for all these expenses, and finally - when she was destitute enough - the State took over with Medicaid. Now, they suck up her Annuity, decide how much physical therapy she can have, whether she can go to a dentist to fix a broken tooth or require that it just be pulled (my dentist said Medicaid only allows one set of dentures per lifetime, so be careful what you chew!), control all financial aspects of her "life", and let her keep a $60/month allowance... She's supposed to save that to buy new clothes or shoes, etc., but has to spend it quickly enough that it doesn't cause her to exceed the personal total asset allotment of $2,000. (She has to have shoes that cost about $140, so that's about 2 1/2 months of allowance?) Gee, it's so wonderful she deprived herself for most of her adult life to be able to pay a year's worth of expenses Medicaid would have taken over if she'd enjoyed her life and no longer had any money! You cannot save enough to pay if you have to go to a nursing home or other similar arrangement, and you live long enough... It has little or nothing to do with personal responsibility or fiscal astuteness... It's simply the reality of medical costs and nursing homes and a long life.

To my shock, my parents decided they were "too old" to do anything at age 70 and then began waiting to die. They've spent most of the last 10 years sitting in recliners and deteriorating. It's honestly like they skipped their 70s and went straight from 69 to 80, they aged so fast! It has made me think about ATTITUDE and mental health, in addition to physical health, as being so important along the way. My parents were health nuts in their younger years and I never, ever envisioned this is the way they would spend the majority of their retirement years. They also planned & saved but the money in the bank does little for them in their miserable life. In the mean time, my father-in-law is a pauper with no money and living in a rent-assisted senior apartment and is much happier. I am starting to wonder, WHY SAVE SO MUCH MONEY just to sit and wait to die every day. That's my take from the last decade of my life....

Image, both your posts stuck a cord with me. I've seen people who were like the proverbial grasshopper, living off welfare and never even attempting to conform to social norms and there they are in the nursing home in the bed beside someone like our parents who deprived themselves from fear they would never save enough. I ask myself, who was the bigger fool?
And I keep hearing about all these excellent nursing homes that are like 5 star cruise ships. Is it the luck of the draw that such places exist where you live? - 'cause I'm just not seeing it, your description fits much closer to my observations.

That's a tough situation, being a nurse and I take care of my MIL, she lives with us, I am 38 and have 2 kids and 4 step sons and I get frustrated and angry at times, it's tough. She tells me she will never go to a home. There are 2 other siblings that don't even call her.

It's tough not having privacy and it's like having another child in the house. As far as kids, I guess it comes down to either you want kids or you don't, but don't let your thoughts of if you will burden them. If you raise the best you can, they will make the right decisions for you when that time comes, hopefully lol, babies are different though. With my MIL she stays up so late and I just want to say go the hell to bed, with kids I can say that lol.
My grandmother moved in with my mom a few years ago and she has her own space and she makes sure she doesn't intrude on my mother and her husband, unlike my MIL. I do think your wrong in thinking taking care of your dad isn't commendable...it is, it's a tough job and situation and it's ok to feel the way you do at times, I feel guilty feeling the way I do sometimes, then I realize how my MIL has no one else and how lonely that would feel, the thought of not being wanted.

I would talk to your senior services and see what they recommend, maybe assisted living, he might be upset at first, but happier in the long run and you being so young, you will be happier and less stressed. You have to do what's best for both of you.