How has caregiving changed your views of life and aging?

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!

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

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

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.

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!

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

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.

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.

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.

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.

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.

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. 

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 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 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.

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

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.

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).   

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. 

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.

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.

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....

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.

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.

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.

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.

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.

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!

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

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??!!