How has caregiving changed your views of life and aging?

Caregiving hasn't really changed my view on suicide or religion.

It has shown me the truth of how others are. When you observe and strip down how the world preceives them, you can see who they really are by their actions, or lack thereof. People will surprise you in good and bad ways.

It has given me focus and anxiety. I have goals but do not know how to achieve them. I know broadly what I'd like to do. No clear path though. I'm conflicted. I do not know whether to reach for the almost impossible while having no end date for caregiving to strive for my future. Or let go, clear my mind, not reach for dreams that cannot be grasped, try to reach peace and tranquility in the present circumstances to protect my sanity.

It has ummmm lessened my urge to quit smoking. I rather not live long. 

Thanks Tinyblu for posting this, and for all who answered. In some ways, caregiving has not changed my views on aging, as I still believe that aging is a very individual matter. Chronological age is imo not the issue here in that some people are active well into their 90s, continuing to do what they love, and require no help, while some (I am thinking especially of those with early onset Alzheimer's) become debilitated at early ages. How it has changed my views on aging is that, while caring for my mother, I am determined that my daughter will never be a caregiver and I am all the more determined to keep active! Easier said than done after an exhausting caregiving day (if I didn't work and hire professional caregivers, I would collapse).

Although I understand and have tremendous respect for those who experience caring for elderly parents as fulfilling and rewarding, it is also emotionally, physically, and financially draining. And stressful. I think most of us have PTSD, except there is nothing post about it.

As family caregivers, we all too often give up so much, even our lives (something like a third of caregivers die first). I have read stories right here that are like Gothic horror tales, with caregivers who are trapped 24/7 with emotionally demanding and even physically abusive loved ones. I don't know how you do it. My mother is easy by the standards I see here, but I find caregiving incredibly stressful and depressing. To be there and see her decline and suffer and there is nothing I can do is relentless.

I don't want to live in AL or a NH some day, and in the US unless you are a multmillionaire, no matter how much you save, unless you have an extremely generous pension plan, you will exhaust those savings and wind up on Medicaid. While I respect the choices of those who want to live as long as possible, i am already looking into Dignitas, a Swiss organization that offers assisted suicide to anyone who has a good reason (they have provided it to people suffering from depression, which I feel is going too far, but it is so reassuring that this option is available when the time comes). If I get cancer, I will ask only for pain relief, and move to Oregon. Or I may do what my grandmother did - after eight years in a nursing home after a stroke, she stopped eating, starving herself to death.

I'm glad that the thread turned political halfway through. This is a political issue, as family caregivers are expected to do it all, and we just cannot. There needs to be an infrastructure to care for those who cannot care for themselves, whether they are disabled children or elderly in diapers, incapable of communicating in more than grunts, moans, and cries. This is going to become a massive crisis, as hardly anyone has a pension any more, job security is nonexistent for most (and if you're a family caregiver, full time work is very difficult), and real wages are dropping while cost of living is increasing. In Japan they are developing robots to care for the elderly.

I would never suggest assisted suicide for anyone but myself, because there lies the possibility of euthanasia, but I think all drugs should be legalized, and if that happened, those of us who choose to exit with dignity, on our own terms, could do so.  I would not tell my daughter or friends until it is time.  The last thing I would want is for them to feel guilty over a choice that is mine to make.  There is a difference between suicide from despair and end of life management.  As others have said, with beloved pets when quality of life is gone, the last loving thing we do for them is that last trip to the vet.  Why not let humans choose that for themselves (of course, with safeguards to make sure that it really is our choice, no pressure, no one trying to grab an inheritance before it all goes to the nursing home, that we are competent, etc).   

In case anyone else reads these answers posted two years ago, here's some present day input. I am almost 86, of sound mind and in fairly good health. By choice, I live in an independent living facility so my children won't have to travel hundreds of miles to pick me up off the floor. I have had a good life, and will be happy to go whenever the Lord calls me.

arianne777, thank you . I wish more older people could or would make arrangements like you did to spare their children so much grief.

I think being a caretaker makes you see first hand the horrors of aging and sicknesses and mental issues that come with advanced age. It would scare me to death knowing I could some day be in that state. It would make me want to run as far away as possible from the possibility I would be forced to be a caretaker. I would start years in advance making plans for the day when I had to face that situation and I would then be prepared to do whatever I had to do to find a safety net for the patient and in doing so preserve my own sanity and my own life.

I appreciate the honesty. Sometimes when I read how blessed we are to have our parents, I wonder if people are writing it for their own comfort. I watched my father die for two years. I've been watching my mother die for over 7 years. It is anything but a blessing when they reach a state of not really being alive, but then keep living for years. After a few years there is no way to count it all joy.

I agree completely. I'm losing my mind. I feel like a trapped animal. Sometimes I rage. I get out some and while I'm out I feel good but knowing what's waiting for me at home brings added dread. Not fair. I'm 67 and have only a few years left and I'll die a miserable caretaker.

I am my Mother's sole caregiver....not to be confused with only child. I have no help and no life. But what ya gonna do? She said she would rather be dead than live in a nursing home or assisted living. I love her.  I wish she would just offer so  I would know my life matters. What I hate is that my brother, who visits weekly for about 1 1/2 to 2 hours and calls Mom nightly to say "Call me if you need anything." never offers to stay while I go out or anything. His excuse is that i have to do everything for her. Everything.  And he's a man.  He would be embarrassed if he had to clean her or help her get on the pot.  Meanwhile my  home is falling into disrepair because I've been with Mom for 3 years. I could go on but why bother. Nothing I can do about any of it. No kids or other of my own. So my life is less valuable than theirs. We never hear from my sister who lives 2 miles away.  So, I wonder what will become of me in the future.  Caregiving has opened my eyes to the lack of options for me.  It is a sad commentary to my own golden years. 

Dear caregiver1931,

I'm so sorry to hear what you are going through. You are a good and decent daughter to take care of your mom. I hear you. I feel your frustrations with your brother and sister. I had the same experience in my family up and till my father passed last year. Being a caregiver is a lonely road.

I know you are doing the best you can. But for myself I found the anger and resentment building and building because I had to manage everything for my father after his stroke. I always helped out but things really escalated after his stroke. The days, months and years seem to pass me by. And not that my dad has passed I am lost. I don't think I was prepared for this intensity of grief.

I hope you can get some respite care or access some community resources to take some of the load off and get some time for yourself. Don't give up on yourself. You are valuable. You do have a life. Being a caregiver is noble and good and kind and decent. If I make it into my 80s and 90s I hope I have someone looking out for me. Some that cares and hopefully won't resent me.

Thank you cdnreader. I understand what you are saying. I'm so sorry about your Dad and the pain you feel. I start feeling sorry for myself, then guilty. And I miss having a life BUT I also know that when my Mom passes I will be utterly lost. It is a paradox. I won't regret caring for her though, just as i am sure you dont. Thanks again.

Thank you for your condolences Caregiver1931. I did the same thing. I felt sorry for myself and guilty too. But it was also anger at my father for giving up on life even though I was trying so hard to make things right. Anger at the doctors, the siblings, the medicines, just everything around the burden and responsibility of being there for my dad every day. I agree with you, I don't regret the time I spent with my dad. I only regret that I didn't step back. I became too impatient and angry at the end about everything and I didn't recognize that my dad was dying. And now that he is gone, the pain is unbearable. Its the reason I don't know if I could have a child take care of me as an elder. I don't know if its fair to put them through the same turmoil, the same grief, the responsibility as well.

Caregiver1931, I hope you can get some of your life back with respite care. I truly think its worth thinking about. Take care of yourself. Wishing you all the best. Thank you for your compassion.

I'm 38 and caring for my grandmother. I never married as the cards just didn't seem to be right and now I have no life and no time for a life as she takes up all of my free time. I figure I'm spending my perfect years caring for her since she's 87 and keeps insisting she's going to out live me.

What caring for her for the past 3 years solely and before that 8 years prior with the help of my mother then for my mother for the 3 years she had cancer, is that I seriously do not wish to live old enough to be old. It's depressing. Sure you might get lucky and get to have a few good memories made but honestly if you are healthy enough to enjoy life then you are probably not spending it with family. They might visit or call but you are responsible for cleaning, cooking etc for yourself. If you are unhealthy and need assistance either you are placed in a home or are spending so much time with your family that you can't remember and are not making those wonderful warm and fuzzy memories anymore. Aging sucks. I think the advancements that were made to allow people to live longer and to be 'happy' have just instead made people live longer in a body that is old, tired and painful.

As my grandmother's doctor said, "People like to believe that people grow old and die with perfect working organs. In reality, the organs have or are failing as you grow older and older and you are probably outliving the usefulness of the organs. People have transplants, surgeries, implants, and take medicine just to have the organs last as long as they do since they are living longer and longer." It's depressing for me to think about being old, stuck in a bed waiting to be turned or repositioned by someone probably a stranger since I have no husband or children to care for me, waiting for someone to remember to change me or take me to the bathroom, and unable to see, talk, eat, hear or remember normally but still 'alive'. I personally hope I die way before any of the old things happen to me.

Dear littlemisskitty,

I know its hard being a full time caregiver. Its very kind of you to take care of your grandmother. I hear you. I too felt like taking care of my dad was swallowing up all my time and I just couldn't get away. And there was no offer of anyone taking care of my dad so I could even get one day off as it were.

Have you considered respite care? Or accessing any resources in the community or through the church? I know this is easier said then done, but try to do something for yourself as well. No matter how noble and kind we are, I think taking care of an elder full time can lead to resentment and anger building up. In the long run it can affect the caregiver and the care we provide to the elder.

I agree with you. All these pill are prolonging people's lives but at what costs. What is the their quality of life? Are they happy? Life is double edge sword. I was so wrapped in my dad's care. It defined me. Now I am broken since his passing 5 months ago. I don't know if I can put my own child through this.

Love your post!! My mom planned to go into an assisted living when she felt the need for it, it made me sad but I realize she did that for me. My dad is there now too because of a stroke and wants out of there, long story but I share all your feelings

It's made me scared to death, my mother was my best friend and now she has dementia and severe panic attacks seemingly from a blood clot in brain from AFIB, Drs can do very little to control the symptoms with anti anxiety medicine due to all the restrictions on any controlled substances......she actually believes she is still driving cooking etc an she can't do any of that nor can I let her-there is no one to help an even tho her and my dad have insurance they both refuse to let outside help come in an just struggle all day and say they hope they die.....it's killing me, I closed up my law practice to help them an my brother who is bi polar and he is now "controlling" them.....it's the worst case I've ever seen an I know procedurally what the answer is; it's just so bad when it's your family. My mom can't remember where she put their investments an I have quarter of a million $$ in CDs spread out on my dining room table but the bank says the money isn't there.....great now what and they won't allow or accept help So it's a living nightmare an I can't let it go on to much longer as they depend on me for everything ....I have no kids because of what I've seen an it's made me fearful of the future so when you are IT to be the only responsible member of the family an keep the other relatives from preying on them for financial help then you realize you must get your affairs in order before the day comes an you can't -I used to love my life an now I hate what it has become, but we all have to face reality I guess.....an be thankful for the good things!

whinnydog, Please don't be offended, but why in God's name would you close up your law practice to take care of your parents? That is insane. You deserve a life. Please get help for yourself. You have to let go of the guilt. Call your county agency on aging, if you continue down this road it gets worse and worse. Realize that and get help.

Thank you "feedup" I have realized that now an I am not offended at all as I actually wanted to hear what others have to say so I thank you...it's not to late to do things differently as this plan is not going so well :) it's just so difficult as my parents have helped me a lot over the years an everyone else but when they need it the others have disappeared-I'm preparing to figure out a second plan so thank you for helping me :) they did zero in terms of estate planning an it's a mess....it's like I know what to do but just doing it is really hard especially when if it was for another's family I would have done it already :) so thanks

Just from watching my mother and her contemporaries deteriorate, I sometimes think that there are worse things than dying young.

Windy: I see now I never answered your question..My bad! I suppose there could be an addiction of not being able to stop at every bingo hall in town! Maybe people will want to win that new toaster oven or coffee pot very badly!

No way would I ever want to live such an unproductive life as I see my parents live my mother sits in the recliner all day long demands to be fed and watches the same program over and over again. My father fell down some steps broke his hip and passed away after surgery peacefully . He was entering late-stage dementia . I have told my children that I will be keeping a stash of drugs someplace and they laugh at me and say how will you remember where you stashed them LOL but seriously I would never choose to live this way hopefully I remember where I stashed them drugs in 20 years .

Nightmare1954 - My mother is just like yours, and I don't understand it either. She won't do anything for herself if she can possibly get someone else to do it, even things she's still capable of doing like making phone calls, organizing papers, etc. She has no interest in anything that doesn't provide instant gratification, and she no longer gets any gratification from accomplishing tasks or solving problems, even her own. To me it's just so mystifying, and I can't believe I'll ever be like that. I can't imagine wanting (let alone expecting) somebody else to do my basic household tasks and manage my schedule, finances and other affairs. It's beyond unproductive IMO - it borders on parasitic. I can't imagine, for myself, having any response to disability other than doing everything possible to work around it in order to maintain my independence and self-sufficiency as long as I can. I can't imagine just shrugging my shoulders and saying "Well, I guess it's time for other people to take care of me." Yuck!

My views on life & aging have changed drastically. I used to believe the hogwash about aging gracefully with your adult children and your grandkids there to help. I used to picture life as full of possibilities and hope. These days, I am angry, depressed and more pessimistic than I ever thought possible. I used to be the one with the answers that rang out like Christmas bells, saying, "oh but look at the bright side. .." and always, always saw a bright side.

I really don't like this new me. And I really don't like getting old. And what I *really don't like* is - LIFE.

That scares me.

A friend talked to me today and asked me how old I am. I told her 65. She said that my mother could last many more years and by the time she died I would be old or dead myself. I knew what she was saying was true. There is no less productive way to spend years of life -- caregiving so someone can watch TV in their home.

I like to be all noble and everything. But sometimes when I'm trying to go to sleep at night I think about how old I'm getting and how much more I need to do. My heart starts pounding like I'm scared. I am scared. I never planned on sacrificing such a huge part of my life to something that is important to only one person. Especially a person who had not been a good mother and who seems like she's going to live forever.

I hear you, JessieBelle. There's no less productive or less fulfilling way to spend years of life than tending someone who only wants to sit in a chair, eat, and watch TV. That's my mother too. And my life has just taken a turn for the worse because my mother, after her third hospitalization this year, has been diagnosed with kidney disease and congestive heart failure. I am not living with my mother and tending her daily (and I don't know how anyone can do that, honestly), but my plans for the immediate future have just been tossed out the window. I planned to travel this summer. I planned to get a job so I could afford to travel more than I could otherwise. I definitely planned to return to my seasonal job after the first of the year, which I enjoyed tremendously and which became a sort of social life for me. Now it's all up for grabs. My mother has 5 more specialist appointments just through the end of this month, and who knows when the next crisis will be? I feel like I can't make any plans, take on any commitments, until she dies, and who knows how long they can keep her alive with all these hospital admissions just to stabilize her and all these specialists and drugs? Her life could not be more useless, and making my life useless to take care of hers so she can keep draining the energy of others for more years, it makes me very bitter and despairing. And my mother too is not the most pleasant person, to put it mildly. Rather, she uses her illness as an excuse to be even more demanding and self-centered than usual. It totally bites, being in this position. I wish you well. I wish both of us well.

JessieBelle and CarlaCB, I can totally empathize with the way you feel!! I just turned 50 and my parents have totally hit the skids. They are only in their 70s. My mom is narrowing down her world to me and me only, very rapidly. If she lives as long as her mother, I will be 71 when she dies. So, really, I may spend my years from 50 to 71 having to derail my plans and the things I worked for, to be her only support? Not to mention I need to work full time for at least another 15 years. My parents were able to retire much younger than I will be able to, things have changed for older Americans, especially women.

Upstream, I hope you can keep some semblance of your own life. Our parents can expect too much from us as they get older. Your mother is still young enough that she can pick herself up out of the depression, instead of transferring her weight all on to you. We always feel under pressure to do things for our parents, but good hearts are easy to abuse. Is your mother under treatment for her depression? I know that her feeling better would make things better for you.

I feel more and more resentment to my parents and ILs that never planned for anything beyond retiring and living the golden years. Their assumption (and demand) is that as they age and can no longer do or want to do what is needed to stay in their oversized houses - is their kids will step up and do it all. And help pay for it. No willingness to consider assisted living etc. to make their aging years more comfortable or getting help. Why should they when they have children? GRRRRR...........

I cannot agree more with all that has been said. I, too, am a person with a kind giving nature, have been accused of being too nice. But the selfish part of me wants more for the remainder of my life than juggling MY life to accommodate my mother's. My mom is very loving and not much bother now that she is in AL. But, I still can't help but think about the years *I* have left. How will I spend them? And why is it that my 3 siblings have left it all up to me??

It's awful how some aging parents can be. I also see the kids ignoring how bad off their parents really are, and should be in nursing care. A close friend's mother has lost control of her bowels and just goes anywhere. The kids still think she's "good" to be at home. I don;t get it. It can be a screwed up world when it comes to aging parents and their kids. God help us all.

Caregiving has made me more aware of growing old myself. I don't know if that's good or bad. It's also taught me a lot about myself. Some things I was happy with, others not so much. The hardest thing has been my lack of patience. I'll be working on that the rest of my life!

I've been a caregiver to my mom for 10 years now. She is in a steady age-related decline, but is mentally aware for the most part and can still do a few things for herself. She turns 102 this month. If someone had told me 10 years ago that she would still be alive at this age, I wouldn't have believed it. I'm happy she has had a long life, and glad I was there for her when other family members were not able to be. Even though, I still feel angry at times that my husband and I have had to put our lives on hold, especially now that we are planning our retirement. We had plans to sell our house this year and move out of state where the cost of living is lower and our income would go further. But for now, my husband will continue his employment, and I'll continue caring for my mother, and we'll both continue being patient until our situation changes.