How has caregiving changed your views of life and aging?

What I know is...there isn't any way to know the future. The life spent planning can easily be upended by the life that wasn't planned.
when I speak with people in their 80s and 90s, what I hear is "I should have.." "I wish I had gone/done/been....." (Fill in the blank)

So what I know is...... When my time with my parents is done, I am cutting loose. No more planning for next year, next decade. Do it now. Follow the dream that has been in planning and on hold.

A life of planning very often means a plan never lived.

Katiekate - it's funny you should say that. My mother is the type who did everything she wanted with no regard for the future. If you asked her about her regrets, she's say things like "I wish I could still travel" or "I'd love to be able to go camping again." Whereas if you asked me, I'd say "I wish she had worked a few more years, so she could have saved something for her old age instead of spending down her inheritance from her parents while waiting for her SS to kick in." My life was the one upended by her failure to plan. Yes, I'll be following my own dreams when she's gone. But I'll make sure that my freedom doesn't come at the cost of anyone else's sacrifice or burden.

zytrhr- I agree AS should be an option. I'm one of those with no kids myself. I have always expected to live out my final years in a nursing home. I look at it as a comfort - having people around to take care of me and not having to worry about whether I can still drive to get groceries. I plan to make new friends in the nursing home and read a lot of books. AS would be an option for me if I were in intractable pain or if I had a type of dementia with confusion that became scary and nightmarish for me. I agree it should be an option for any one stuck in a permanently unlivable situation. For me, though, a nursing home or assisted living isn't by itself daunting or unacceptable

Momdoesn't: I can attest to how hard it is when your LO lives sooo many miles away.

Hi momdoesntknowme,
It looks like your parents made a plan and were living it. Good for them for stepping up. Is it possible your decision to step in and bring your parents home was not what your parents wanted? Perhaps they were trying to avoid consuming their children's lives? No disrespect intended, I'm just trying to understand if they wanted intervention?

Under certain circumstances, even a modest number of miles can create a huge gap. Altho I only lived 25-ish miles from mom, my full-time (and then some) job was 30-ish miles from my house -- in the opposite direction. On weeknights, I was perfectly willing to drop in at mom's at 7:30-ish p.m. and help for 2-3 hours once/twice a week. But nooooo. Between confabulation about how "busy" she was (early on) and sundowning (later), weeknights were a bust. Consequently, my weekends were mom's weekends. Felt like a real crock, knowing that mom hadn't worked outside the home since the 1960s. What started as her lament (tinged with value judgment) that "times have changed so much" deteriorated into her brain-damaged inability to care about my time. Or anyone else's. So, yeah, the mere fact that I need health insurance, a roof over my head and a 401K diminshed my ability to be mega-daughter. This is so hard for all of us. Whether the caregiver is next door, in the next county or across the country.

I will never put my children in the position of having to make these choices.

Honestly, my children will not know where I am or what I am doing. When my time comes, I plan to let it happen. Make sure no one can interfere with letting me go. What they do not know cannot force them to make the choices I had to make.

What is tough for me is I am at the age [70] where living in a large house has become too much for me, but I am not ready for Independent Living apartment..... maybe a 55+ community if the HOA fees aren't through the roof. That way I can buy a small home with a first floor bedroom and guest rooms upstairs.

I toured one community this past week... say what, three cement steps and no railings up to the front door porch., even I was unsteady walking up... and inside, the stairs to the 2nd floor were way too steep, more like rock climbing. The walk-in shower could fit a crowd so I viewed that as a lot of walls and glass doors to dry off, I would be too tired to make breakfast afterwards. Looks like this builder never consulted with anyone 55 and older. Cross that community off my list.

It angers me that some elders don't have a plan at all as they age. My late mother was proud to remain in her own home 400 miles away from me and 4,000 miles away from my brother. Of course, that was his choice to leave our widowed-early mom and move far away. I had already married several years before (my first husband was a bad man and threw myself and our daughter to the wolves, opting to run off with a b##ch). My mother dug her heels in and said "I'm going to live alone in my own home." That was until I arrived, moving in with her (having to leave my home and life behind) and I said "you've lost your ability to choose your living conditions." She wasn't happy that I moved in.

BlackHole, Katiekate and freqflyer: I hear you! ((Hugs))

Moving in with my mom at 29 and caring for her up until now age 37, has changed my views on life in positive and negative ways. Positive ways are teaching me a new kind of patience. Helping a family member who happens to be a special, strong-willed woman who brought me into the world. Learning how to nurture your parent in a child like ways sometimes. Then some negatives are the complete and utter sacrifice of your own agenda, life, privacy, realationships, etc, etc,. Pretty much forget a social life, and if you do manage to somehow carve a an evening for ones self then you know the third degree, and a hundred questions are coming. Its like being fourteen again and trying to go out with friends, So we all know what that can be like. I think its why we as caregivers little by little stop going or doing things we once did easily, because something enjoyable became a nightmare to only attempt it!! Goodness greif! Life just isnt easy though, but with caregiving you add a whole lot of extra stressors to your existence. But, with all that said and we know it feels great to just let your emotions out here on the forum without fear of judgement is a true breath of fresh air! We wouldnt do it if we truly didnt want to or know in our hearts its the right thing to do. Yes, a double edge sword i suppose. So it changes our views on just existence in general and their will be bad days and then worse days, but when we do get to a new, different chapter one day we can look back without regrets. We made the appropriate decisions at the right times. When the going got tough, we didnt get going. No, we stayed true to personal commitments, and we all know thier are special moments that you are so grateful for during those times, cause you never get one minute back in this life.......so if i was to offer advice, although no one asked i'd advise to think positive when its easier to dwell on bad, stay optimistic because things constantly change, and you have to change with the times. Grow, perservere, set a couple realistic goals, and make that personal time to work on them. Life is too short, and were here only a short time, so prayers and well wishes to you and your loved ones! Remember to take care of yourself too😄

I am changed as everyone here is from the experience of caregiving. I live with constant guilt that I prolonged my loved one's life with care decisions. I don't want to face aging. Two of my relatives died relatively quickly within a few weeks of falling ill in their late eighties. One was dependent for five years, and two have been dependent longer, one for almost twenty years (this one had no medical intervention, never went to a doctor, and took no medicines) and one now in the eighth year of dependence with no end in sight, very healthy physically, but no mind left.
I didn't know I'd spend a decade (and counting) of my life taking care of my family. I have lost so much of my own life, job, relationship, hobbies, activities, that I also lose hope for my life. I think caregiving has horrified me as to the way we strive to live longer and then do so either mentally or physically broken ( or both) years longer than is good for anyone. Medicine doesn't always dictate that, my grandmother never saw a doctor and took no meds and was dependent the last 20 years of her life. I would love to have an exit plan. I live in Oregon, so it's possible to have one if you have a diagnosis. If you are experiencing aging without a diagnosis of a terminal disease, you're not eligible for assisted suicide. My doctor says if you want to stop living, stop eating. Guess that's what I'll do when it's time. I had a maternal grandmother do this when she was at the end of her hope. I have been denied LTC insurance because of polio when I was younger, so I know I cannot afford to take care of myself. And you all know that in a facility there's a point where someone has to pay bills, monitor care and do the shopping. People without anyone to look in and take stock of what is happening get the worst care. And LTC insurance only goes to the people who have someone to jump through the paperwork hoops when it's time to claim it. My loved ones who had it would have never been able to deal with the paperwork. So, whether we like it or not, all of us will need someone to look after things.

There should be booklets in doctor's offices telling people NOT to seriously contemplate becoming a caregiver. It may start out easy but ALWAYS turns out badly. It can only end badly.

My 91 MIL has been with us 12 years. Started out easy. Now the only thing she does for herself is shower and dress and toilet herself.

I have watched her slowly decline in health - yes, she made poor health choices - NEVER said no to a piece of cake, a cookie or ice cream - even now with diabetes. She refused to do her physical therapy and then wonders WHY she is in such poor physical condition. She lost her ability to drive and blamed me and then became vengeful and hateful and vilified me to anyone she knew. Sadly, since she did this behind closed doors - it was years before I knew what she had done and said. She destroyed any trust I had in her. I care for her because I am a God fearing woman with a kind heart and she has NO IDEA how fortunate that she got stuck with me. :0) I just keep on giving...............

Has caring for her changed me? Absolutely! For the better? Not sure. I know I see my own mortality every single day. I resent that her other kids only see her when she's made up and looking pretty for a couple hours once or twice a year. I see her in her night clothes all the time, barely lifting her feet when she walks, complaining about being alive and wish she were dead and sharing all the ugly details of her dismal life with me each day. She is very negative.

If the sun shines - it is too bright. If it rains - it is too gloomy. The food is either too hot or too cold. Too sweet or too salty. Nothing is right in her life.

I know I hug my kids more and try to be nice to them. I pray every night that I not become my MIL as I age. I do resent that my BEST years of retirement - those before age 70 - are gone. I often think I will die before she does. She just keeps on plugging along and hating every minute of it. I know it's hard for her. But she has NO IDEA how hard it is for us.

I have told our kids to put us somewhere decent and stop by once in a while. We do not want them to sacrifice their lives for us. It is so unfair.

In times past - there were larger, extended families who actually HELPED EACH OTHER care for older ones. Then again, in times past, you did not get old unless you were 'vital' as Margaret Mead once said. I read an article written by her in my teens and still remember her stating that she never feared old age because every old person she knew was 'vital' - people were either healthy and vital or dead back then. Now they are propped up with multiple pills and procedures. My mother in law wants to be dead - but fears dying. She can't win for losing.

What a predicament to be in. How truly sad. And it is repeated over and over and over. Just read the comments in this thread.

Oldcodger, I could have written what you wrote. Your words sum up the things that are going on with my mother and me so well. Thank you for writing it so well. The sad thing is that even when we feel like we need to get out of the situation, there is nowhere to turn. Families and friends have left. Doctors are no help. And the parent doesn't want change. So you give them the medicines that keep them alive another day and wait for a catastrophe that you'll have to handle alone. Wouldn't it be nice if there was a circle of people who cared? That would make it so much easier.

God bless both of you for speaking up. Given the chance to do it over again I would flat out refuse . It's been that difficult.

Clara, same here... no children, and after seeing the wonderful independent Living apartment that my Dad had, tons of sunshine, I was ready to sign up right then and there.... but it was too soon for me.

I've been fugal all my life, have a good savings/stocks so I need to figure out how many years I could reside in IL or AL. I am just so glad such nice places are available. I wouldn't mind being in Assisted Living at this one place, even if it is a studio apartment.... I have the rest of the building for myself :) Numerous living rooms, couple of nice enclosed sun porches, couple of nice outside porches with chairs, restaurant style dining room. And wonderful staff who are smiling and happy to help you out :)

But is there a cocktail lounge?

Windy - at my inlaw's indy living not only is there a huge cocktail lounge but also a bar surrounded by club rooms where residents play chess, cards, billiards, etc. And it's all inclusive so it's paid for in their rent. Indy living is like a cruise ship that never leaves port.

Cool.......I'll bet they have some "Buzzed" bingo sessions in that joint. I just hope I can afford that level of senior housing in a few years.

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.

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/

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!

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

Can't stop drinking or playing bingo or both?

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

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.

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!

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]

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!

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.