How has caregiving changed your views of life and aging?

Caregiving brings out the best and the worst of your family. My siblings have always been self-centered though can be extraordinarily giving and kind. Since I'm Mom's live-in caregiver, their pettiness has grown. When I first got here months ago they were in the extraordinarily giving stage and I seriously thought of moving back here permanently when Mom passes. Now, when Mom passes I am so out of here.

Also, I need to figure out what my needs might be when I get elderly. With time flying I shouldn't delay too long!

I have to agree with you Tinyblu. I'm actually the sole caretaker of a 91 year old mother and it's wearing me thin. She's been controlling her whole life and I've now figured it out. She's a narcissistic mother. She meets every criteria - so all those years I spent not feeling like I was good enough - with low self-esteem can be attributed to that abuse. She still tries to tell me what a horrible person I am - and how badly I treat her. I really don't know how much more of my life I can give her. I don't feel guilty anymore, have learned to love myself and know that I'm an awesome daughter, friend, co-worker. My family keeps asking me how long I'm going to work. Well I'm a single homeowner and I need the money, the stimulation and having people around. I also do not have children and worry that I will never be able to go and live my life while I still can. I still feel good at 57, look and feel much younger, and try and take care of myself but it's hard! My fear is my health will deteriorate due to all the stress and I won't have the adventures I still seek. But I agree with "assisted suicide"...why do we make people suffer? It's all about money! The drugs, nursing homes/doctor visits - all for what? My worst fear is to be put away in a nursing home, staring at the ceiling and pooping myself with no one around to even check on me. Even though having children does not in anyway mean you will have someone around. It's a draining and frustrating situation - Everyone take care of yourself as best as you can!

I have learned that getting old is not for sissies. I told my husband that will get a wheeled cart, sleeping bag and hit the road, live or die quickly i am not going to be a burden or a vegetable (sorry if that word is offensive) lying in a bed staring at what, who knows. I have no children and the odds are my husband will pass 1st, age differences. Maybe not considering the stress I have dealing with my narcissistic dad, but I will go out graciously not mind scr***ing every person who tries to help. The entitlement he feels on my life blows me away, he made his choices but, I'm supposed to pay the consequences. Nope!

I agree to everyone's comments. I remember my dad taking cholesterol medicine and maybe that is what has caused his Alzheimers. I do not have children and never thought about what would happen to me when I get older. I am not married. Now after taking care of my parents, I hope I can just take a pill when I get in their condition. I know my nieces will not take care of me. What is taking care of someone. Now it is cleaning them daily, my dad cannot go to the bathroom anymore. My mom hurt her back so hobbles around in pain. She drinks a lot all day so does not remember what she says at night. Sometimes hurtful things, sometimes controlling things. I just ignore them now knowing she will not remember in the morning. My life is not the same as it was four months ago. I read about children taking care of their parents for years. I know I would not want to do it that long. Glad to find this site since it is good to read other's opinions and know we are not alone in our thoughts. Today I had a weird thought. I thought if I had to choose, I might not have chosen my mom as a friend. Since she is my mom I have a relationship with her. I cannot get away from it. Most of the time she is OK, but now that she cannot hear it is a lot of conversation that goes: What, what sorry, what did you say. It is not a quality life for sure for any of us. They are both in their late 80's. Sorry for sharing, it is depressing sure, there are some good days, not many. It is just a phase and I hope it does not last too long. I know I will be sad when they are gone, but like others it seems like I lost them a long time ago.

All the baby boomers are entering this phase right now. Things are so different from 70-100 years ago when it was more likely that families lived closer to each other, even several generations in the same house. Families all took care of the older ones and expected it.
I don't like the way things are today. I think we are straying from all the things that kept us going and kept us human. I pity those of us who are really stuck taking care of these older ones all alone, just because we care. It's a bad situation. In my own case I did have a sister who helped me when she could, or I would have had a breakdown I am sure. Some of the stories on here just break my heart. It shouldn't be this way. Something has to change I think, but how?
I think of you all. Some have it so much harder than I did. It isn't fair - no way - but it sure is life today.

Update- My 93 year old Mother died 2/20/18. I am grieving for her, but my unstable emotions have made me feel something unbeknownst to me. I'm also feeling traumatized. For 18 years I willingly did everything for her, but the last 5 years were very intense. Watching my beautiful mother slowly decline physically, mentally was very distressing for all of us. Holding vigil those last 2 weeks of her life was grueling. Being that she was a very religious person, I prayed her transition would be peaceful. She repeatly said she was afraid.No amount of tender, comforting words, prayers, or Priests eased her way. She was on hospice .Ativan was administered to help alleviate her anxiety. Morphine for her pain helped calm her.
I've witnessed deaths in my line of work. Most were quick & peaceful. My Mother's death was not.
I also have learned that, even amongst the closest of families, long term caregiving & longivity, can & will fracture a family.
So my original answer to this question remains steadfast; Quality of life vs quantity for me. I will not subject myself nor my family to such anguish.

CaringRN, I am so very sorry for the loss of your mother. What a wonderful daughter you were to her. This world can be so painful, but people like you are a light.

CaringRN: My condolences on your great loss. I can't imagine how hard the process was for her and for you. May sweet memories of your mother bring you peace.

Thanks to a new perspective of live-in caregiving for Mom and perspectives from reading caregivers' posts on this site, last week I rewrote my DPOA for HC and included a passage that if I reach Stage 7 of dementia or Alzheimer's or last-stage cancer and expect to have less than six months left to live to stop all treatment other than treat the pain and make me comfortable. The passage in the POA is longer than this but this is the crux. I would hope whoever oversees my care (and the law allows it) to have the courage to implement it and end my suffering (and their's) if I'm in this situation.

CaringRN, I am so sorry for the loss of your dear mother. Sending hugs and prayers and wishing you comfort.

A slightly different tilt to the question...my mother thinks that my knowing every little ache and pain of hers and being exposed to her difficulty in doing so many things will change my view of life and aging. But the change in me that she is expecting is that I will be more patient with her and do MORE for her, because, after all, someday *I* will be old!

Well, my feeling on THAT is that yes, maybe, someday I will be 91 (and maybe I won't live that long). But at that time I will have to go through everything for myself, so why do I have to be subjected to HER issues NOW? Why is it expected of me?

(And why don't my three brothers have to be subjected to it? Yes, they are out of state, but she could be calling them to whine about her life!)

It's not as if my taking care of her to the extent that she would like will mean that *I* get that kind of care when I'm old. That's not how the world works. It's not fair. If life was fair, then I wouldn't have lost my young adult son.

CTTN55 - I could have written your last post. My mother also plays the sympathy card when she wants me to do something (or more somethings) for her. "Can you imagine how it feels when you can't even make your favorite meals for yourself any longer?" is to get me to slave over her stove making her favorite meals to her specifications. She also seems to believe that her inability to do a particular thing translates automatically to my obligation to do said thing for her. By convincing me of how helpless she is to take care of herself, she thinks I will realize that I must take care of her whether I want to or not.

Yes, I feel the same way as you do. I will have my own old age and disability to contend with, when my time comes. And I won't have anyone around me to do my bidding, since I don't have kids and wouldn't put them in this position even if I did.

I feel bad for my mother, sure. I do as much as I can do for her without stirring up feelings of anger and resentment(towards her and also my absent siblings who don't help and don't even care to know). I don't feel obligated to provide for her the life she would have had if she were able-bodied. I don't think elderly people realize just how much work it is to take care of our own lives and take care of theirs as well.

CTTVN55 and CarlaCB, I totally agree with you regarding everything you said...I could have written both...I have been taking care of my 97 year old helpless mother for almost 15 years. She has been in and out of my house, in independent living (but I still had to drive her around because taking the bus was to difficult) and assisted living (but they didn't assist her like I could, and besides, isn't that what daughters are for?), and now I have her back in her house with 24/7 paid caregivers. She has turned into a giant baby, and I'm almost relieved because she no longer needs me for everything now that she has developed mild dementia.
I am an only child and my father begged me to take care of her when he was gone. I never realized how needy she was until then.
I also lost a young adult son and my views on life and aging and caregiving may be very different from others, but I have done the best that I can. She is now on hospice, but in denial that she is dying of old age. Even though she is a devout Catholic, I think she is afraid to die. I have a feeling she will last much longer, but some of her caregivers feel differently.
I guess we are on Death Watch now....

In my mid-sixties, I am reasonably healthy for my age. Until I lost my dad a year ago and my mom to dementia, I was quite optimistic about the future. I imagined myself growing comfortably old; never lonely, mildly deprived of sight or hearing, never incontinent, never plagued with chronic conditions, and dying in my bed of "old age." What a joke. How likely is that? Now, I dread the thought of old age, chronic pain, physical and mental disability, and loss of dignity. If that's what old age means, I want none of it.

I'm 61. I never really thought about my old age until my mom got dementia. My dad died at 85 of a stroke. It's amazing he lasted that long, as he was a life long alcoholic.

Even though mother was a hypochondriac, she has been amazingly healthy. She's 95 and lives in a Memory Care facility.

When she was diagnosed, I wondered if I would get dementia too. Her father got it late (90) also. So far, she's the only one of 7 siblings who has it.

I've got to admit that it freaks me out about being demented. Not something you look forward to. I don't mind being partially physically disabled because you can hire people to help you.

A couple of months ago, I had an "OMG" moment. I have a son who is addicted to heroin. We don't talk, his choice. I wouldn't want him to ever help me anyway but I would like if we could at least talk and have a connection. I'm an only child.

Hubs and I are retiring in Mexico and my "OMG" moment was when I thought, if my husband passed before me, I'd be all alone, old, infirm and demented in a foreign country (even though I've lived in Mexico since 2009).

I freaked out. It got me thinking of what my options are. We had a meeting with my husband's very responsible daughter, who lives in Tijuana. I asked her if she would check in on me if I was alone and possibly handle my finances if I become mentally unable. She agreed. That made me feel a lot better that at least I have plan A in place.

Man, it hit me like a ton of bricks. Why hadn't I planned for this before?
Too busy working and being mother's caregiver, I guess.

The future is scary as an old lady. I hope God takes me before I loose my faculties.

Sue, get this DIL signed up as your POA. My wife and I are having the same discussions... No kids.....Were going to talk to her niece and my nephew about poa. I can’t even imagine what local APS and social services will be like in 10 or 20 years.  Probably back to the county poor farm system.

Taking care of my mother has definitely changed my mind about aging, I have a daughter and I do not want her to take of me if I reach the age of my mother, especially if I am sick and mentally and physically as my mother is, I have 5 siblings and no help, trying to keep her out of the nursing home, I have discussed this with my daughter and instructed her not to try this , I will not blame her , she has watched me as my health is going down because of the stress of this, and I don't want the same for her, I think about my relatives that have gone on and think of how blessed they were to not go thru the misery of old age, which is thought of as a blessing, who is the blessing for? the old and ill have no wish to live like this, and the person taking care of them has no desire to see what old is for some.

Your stories have made me think. Our modern, conventional medical community is intent on keeping the elderly alive as long as possible, and for what? The emotional, physical, and financial costs are unsustainable. To me it smacks of doctors avoiding lawsuits. Healthcare facilities struggling to stay afloat and grasping at every dollar they can get. When will the welfare of patients and their families come first?

I'm not a proponent of euthanasia; that's too slippery a slope. But I do think quality of life should be taken into account. Once we've reached a certain point, how much better to have all medications and treatments withdrawn and comfort care provided only, prohibiting the unnatural prolonging of suffering and allowing a peaceful death. Maybe this needs to happen sooner than later.

Took care of Dad the last 3 yrs of his life. He never asked for help before that. WWII. Depression baby. I wouldn't trade my last years relationship with him for anything and it took til he was about 90 and I was about 70 to get there.Thank you God.

Dear CaringRN,

My deepest sympathies and condolences. I am very sorry to learn of the passing of your mother. You were a very devoted and loving daughter. Thinking of you during this difficult time.

Thank you for sharing your experience and insights. The human journey is filled with so many struggles. I often wonder what is the right course.

I'm going to say it was obvious that my MIL didn't really want to live with us. She didn't like where we lived so far from her long time home (3 big states away and across the ocean for a few months) She missed her friends and siblings. She refused to consider long term care for months but since that was the only way we would drive her back was to move out of her house she finally agreed. We moved her furniture in basically while she was thinking about it. She moved in and thought she had been there for months after being adamant she would never move in. We have our lives back. She is in a safe place. I am saying if its not enjoyable for anybody move on to assistant living even if they say they will never do it. Its healthier for all

I have become painfully aware that I will get old some day but from my own experience I have learned what a caregiver must endure and give up and I will never do that to my own kids!

I am taking a sleeping bag and a grocery cart and hitting the road. I never want to be in a facility and I do not want to be a burden on any family. Just another adventure😛 weedoggie.

I just wonder what it is that makes martyres out of family members, is this caregiving self perpetuating, my mother many years gone now was under some illusion that we, my wife and I would look after her, we were living 300 miles apart and even suggested that my wife go and live with her to, in her words, take care of her in her old age, yeh right, so she would have been perfectly willing to split my wife and me up, we have no children, so I would have been a virtual widower.
When I told her that that was out of the question, she said well xxxxxxxx would have come down but you will not let her, dxxx right I would not let her.
Just because her marriage was on the rocks, but a divorce did not happen because my father was killed in WWII, she resented any of her children having happy marriages, her interfering helped end my sisters first marriage, luckily for her she remarried and went to live on the other side of the world and stayed there.
My mother also did not have anything to do with looking after her elderly parents, she was also on the other side of the world in the 1930s when they both died, so my mother living in her own bungalow not short of money with a small circle of friends all elderly, lived out her life as she wanted. She was 98 when she died in no particular pain well able to get around her house, hopefully I have inherited the same genes, however she resented the fact that we were living our lives our way, when we occasionally visited it was soon obvious that after a couple of days she had had enough of us, with the should you not be getting back? Remarks.
Then when we left it was, I am going back to loneliness again, forgetting that we knew her knitting sewing circle met for hours at a time four days a week at her house.
I never went on any guilt trip and I only hope I am never a burden on anyone

Since my own health has been declining since before my parents started and since my mother is in bad shape in a AL, (dementia, CHF, strokes, falls,etc) and I don’t want to lay eyes on my dad again ever, I’m hoping I have approximately ten years. Although I’m ready to go NOW.

I always thought my parents would live forever and then it happened over night my daddy just stopped working at 85 because of his carpal tunnel he was supposed to have surgery but they discovered that it would be too risky he had afib he was not sick a day in his life but at Christmas time in 2015 his blood count started going down but he looked like he was 50 but he was also having a hard time doing things on the farm so he turned it over to my brother and then Friday the 13 th of May he went to the emergency room and he was diagnosed with esophageal cancer I remember him coming out of anesthesia and he said it’s not cancer is it but he took it well mom was not doing well and left I stayed and he said I am lucky I have lived a good life look at these little babies who don’t get a chance because of that damn cancer and he got old his biggest enjoyment was eating but he tried but he lost it but he would get hopefully when we would go see the doctor he was so cute it’s getting smaller right he was a trooper but he was getting so frail he would get up in the middle of the night saying things but they were true at one time he started dreaming about their dog candi and we had to put her to sleep that week he had his mind pretty much he was hard of hearing but he really enjoyed the new tv we got him and we put closed captioning on I would have loved to know what he was thinking about because I would watch him just staring and thinking it was so cool we would sit in his bedroom and talk about everything and how proud he was of me especially since I got sober then he always thought I should be on tv as a newscaster he said I look like robin mead on hln he would always say he had a good life he did feel bad because he wasn’t always there for me but that was because of my parents relationship but he was my daddy and he always introduced me to the nurses as his beautiful daughter and she has all this hair but she won’t give me any he was only hospitalized twice and on thanksgiving we took them out for dinner and I didn’t see anything I don’t know if I didn’t want to see it but my husband saw in his eyes there wasn’t anything there damn it I am crying right now two weeks after thanksgiving I was coming down there the next day but he had fell he thought the closet was the bathroom he had fallen frequently and my mom couldn’t get him up but I could he was wasting away well my niece who is a doctor of physical therapy and her mom kept wanting him to go to urgent care they never came down to see him before then my sister in law comes in as I was taking his blood pressure she said that doesn’t work I have this one and then she ordered me to go put out clothes for him I put out regular clothes she comes in and she no his pajamas and then she was giving him a sponge bath with ice cold water he asked me to go heat up water long story there she said she was almost done as she was walking out I asked her if we could work together put aside our differences she put her finger in my face and said you stay away from her and her children at this time my dad would wash up himself and try to still do things but a few days later her and her daughter come down and tell him he is going to urgent care he has an appointment at 1 he cried and cried he didn’t want to leave he wanted to die at home he knew he was admitted on a Saturday and he went down hill overnight he knew everybody but he started hallucinating then that Friday he was supposed to come home and he was not going to rehabilitation but mom tried one more time she said will you go for me not a minute later he coded we saw almost everything’ he was upside down tilted bed the nun came and asked my mom what measures do you want us to do he never wanted to do everything to keep him alive but he did need blood but he had a rare blood type so we had to get it from another hospital two hours away he moved to icu my mom and I knew this was just the beginning we went and prayed for god to take him my biggest concern was he was going to die alone then the next day their border collie was hit and killed and no one stopped and that day he asked if Oreo was with us we didn’t tell him but Sunday he was so agitated he couldn’t get comfortable anywhere oh yeah the doctor said we could take him to another hospital 2 hours away and do a catherization he didn’t know what wad going on so the doctor turned to my mom and she said keep him here he wouldn’t have survived and why put him through all that my niece the doctor went crazy and was screaming at my mom the weather was bad and I know my daddy wanted me to take care of my mom so we left but mom couldn’t sit still she knew they were married 64 years well my brother called and said we need to get there now my brother and his family didn’t want anything to do with mom and me but I rode with him and I was confused about why didn’t the hospital call mom so I asked him how did you find out he said his wife and daughter decided to stop in at 10 at night he was gone three minutes before we got there at least he didn’t die alone but he told me to keep my sister in law away from him and he died with her there we sat with him they had each other my mom and I had no one my husband felt so bad he wasn’t there for me he was approved for fmla starting the next day even at this hard time we couldn’t pull together as a family I never felt so alone but my daddy was at peace my brother said to me hope you aren’t mad but they were sitting with him in shifts the morning of the funeral my brother hugged me and said he loved me that’s the last time I spoke to him in 8 months it was so sad at the funeral it was my brother and his family totally distancing themselves from my mom me and my husband you could cut the tension with a knife everybody felt so bad for us my sister in law drove the car we went in complete silence then at the luncheon after I didn’t see it but my husband saw it and so did everybody else but they sat in a corner by themselves and mom and I sat with friends and family then my brother sat down near me talking to someone and my cousin came up to me and said I was the apple of my daddy’s eye and he was so proud of me that didn’t help my brother always thought my dad didn’t want him what was the worst was he didn’t come down to check on mom for weeks my made the excuse he was taking it hard what about her she is alone and I ended up in treatment for the anorexia but it was different this time as I looked back my daddy’s biggest enjoyment was eating and that was taken away from him and here i am starving myself and i gave him his last spoonful of food i am so sorry again i don’t know why but for some reason i had to get it out but it’s been since December 2016 there are days or moments that he comes to me but after all that He was completely healthy one day and then the next day he was old and his eyes told the story he was gone thank you for listening I am still crying

Your feelings are natural!!!!!! The Golden Rule is practiced in many countries but not very often in the great USA. I have been married for 47 years and was a practicing lawyer in private practice for 58 years...... my wife had open heart surgery at age 83 and although her bad valve was properly replaced, resulting strokes resulted in terrible dementia so that, when our seven children (both of us were married before) ran as far away from the problem as thy could, I automatically became the 24/7 person and still, after over three years after the surgery, still searching for the best solution as to residency. I have NO DOUBT that if my wonderful wife had OUR situations reversed, and as she has done for me in our wonderful life together, that she would do for me whatever I have been doing and trying to do for her, without hesitation. So if I were you I would follow my instincts. NONE of us has a CONTRACT WITH GOD! NO ONE is guaranteed a long, healthy life with millions of dollars. Go for what you want! Your severest critics will never do what they might do to help you with such decisions. Adjust your attitude a bit here and there.... it takes time..... but
YOU ARE NOT ALONE!

Everything you said I 100% agree with. I'm 32 having to take care of my grandfather (90) and grandmother (85) and I am ready for them to go. Because of this I don't think I want to have kids, because hell I already have them technically. My grandad is regressing and is like an infant/toddler, and my granny is in her terrible twos and is just unbearable most days.

I have a bf who wants kids but he knows my situation. Part of me wants to get knocked up so I can have an excuse not to take care of my grandparents anymore and can finally move out, but I don't want to be responsible for anyone else either especially when I'm not ready. I'm basically just passing time until one/both of them pass so I can finally rest, decompress and go on a vacation or something.

Why aren't parents taking care of their own parents instead of grandchildren?

@cmagnum I've asked myself this too. But to answer your question my mother does help with them..now. I posted this in another thread, but she took an out of state job with my stepfather when I was a kid. I was given the option to go live with her (now knowing that shouldn't have been my choice). I chose to stay which meant living with my grands. So for a long time she and other relatives were like "you chose to live there so you gotta deal with it." And growing up in my area it wasn't (and still isn't) uncommon for kids to be mainly raised by their grandparents.

It sucks royally. She's since moved back to the same city, and as recently as yesterday my mom really got to see how hard this is and even mentioned putting them in a nursing home. I can't help but to feel smug sometimes about it all, like "I told you so!" but being petty doesn't help anyone. I'm just glad we're finally working as a team with their care.

Still sounds to me like you are being used. I think if I were as young as you are I would give your mom a couple of weeks notice that after that date you are out of there to live your own life which you deserve.