How has caregiving changed your views of life and aging?

My Mom died a year and a half ago but I can honestly say that not the caregiving in and of itself changed me but watching my dear Mother fade away and eventually die did.

I used to be a very jokey person. Laughing all the time even in the midst of trouble. I've become very serious. I still joke but not nearly as much. Losing your best friend will do that to you I guess. Well- intentioned people tell me to move on, go to grief counseling etc. etc. I did finally go to grief counseling. It sucked! The pastor seemed afraid of his own shadow. I got the impression that I made him nervous somehow. I am very blunt. I tell it like it is. I guess that doesn't always go over very well in the religious community. If you ask me that is what is wrong with the "religious" community. Why lie and pretend when we know God can read our hearts anyhow. I think God probably finds it refreshing when people bare their souls to each other. I could be wrong.

Anyhow.............staying on topic here. Yes, caregiving changed me and how I see the world.

Right there with you crazy wife

Well one way being a caregiver has changed my life is that instead of an occasional cry I am getting to pretty much once a day crying out of sheer frustration .....
I know depression etc... but what can anyone say that is going to help me accept it is what it is, pull up you bootstraps and and do what ya gotta do

I no longer save for retirement. Working away my life so I will have a pile of money in my 80s or 90s no longer sounds like a good way to live.

You are only being human as this is your one and only lifetime just as he had his one and only lifetime........ If there are alternatives that allow you to enjoy your own life seek them out

Onlyacaregiver Thank you for reminding everyone that there can be a beautiful experience daily in the final years of a Loved One's life  and  for their Loved One/ Caretaker by their side.

You need a break please for your own sanity. hire someone to stay with dad and go away for a weekend!!!!

This is an awful situation. Why are you POA and not your sister?

Was this agreement to sell the house at a discounted rate in exchange for your parents being allowed to remain in the house in writing?

My sympathies are with your sister. What has she given up over 30 years to live with (and now care for) your parents? Just what is this house worth?

What do your other siblings think? And what is the inheritance plan for your parents estate (other than the house)? Do they have money to pay for facility care? In-home help?

Well I can certainly say in the last year and 1/2 it has made me stronger. As we have enter my moms final chapter of life I have learned that dementia cannot take away a smile, the warmth of a touch, and laughter. As I sit with her as she sleeps and I rub her head I see a peaceful smile come across her face. I talk to her about how it's ok to cross over and start her new life. I dont just see myself as her caregiver but more important as her advocate and cheerleader. It's been hard but I will be forever thankful for this journey. I know I will be ok.

I remember Logan's Run. People there were absconded to the beyond when they reached 30. At least they never had to worry about elder care or Alzheimer's. I do wonder who would do the work in such a population. The 30-40s are the most productive years. Younger people like to goof off and older people run out of steam.

Carla, you feel like I do. The thing that caught my attention was the agreement was to sell the sister the house at a discount. Lordy, how many years would they need to invest before getting the house outright. I sure hope that other heirs aren't going to actually make Sister pay them anything. She has said them a lot of money in caregiving services. In the family's position I would make sure Sister had some help so she could take some breaks and release any claim that I had on the house when it comes time. I feel bad for the Sister who is doing most of the heavy listing for a discount on the house. smh. To me she deserves a lot more.

Who remembers the movie, “Logan’s Run?”

This movie terrified young me as I was the only child conceived of very old parents (most of my friends’ grandparents were younger than my parents.) My parents raised me in fear of “doing something wrong that would be the death of them.” (Looking back, I should have misbehaved decades ago - mostly joking.)

I’ve sacrificed more than a decade of my life to discover my parents have manipulated me most of my life. (I found acceptance letters - one to my dream college with full scholarship, opened but filed away in a locked cabinet. That took a bottle of wine to digest.) ::and that’s merely one thing::

They simply felt it was their right to determine where their child went, regardless of the child’s/young adult’s wishes.

And so tonight I’m rewatching, “Logan’s Run” and I doubt I’ll be terrified. In fact ‘Carousel’ seems a much better idea than being a burden for 5 or 10 (or more) years.

I’m not advocating euthanasia; older me is more keen on quality of life than quantity of life.

My understanding is that the sister did know why she was signing up for and is still not willing to give up the arrangement even though she is burned out.

MJB214 -- I think your sister deserves a little more understanding here.

A generation ago, few people lived into "old" old age, and the idea that both parents could survive to such old ages and with such extreme care needs probably never occurred to your sister. Many of us here are shocked at how long our parents have been able to go on living after they can no longer manage their own daily needs. We're shocked at how long our caregiving commitment is turning out to be. We're shocked (and quite dismayed) to find that our lives are passing by and that our own "golden years" are being spent tending to extremely debilitated elderly parents instead of enjoying our retirement.

You keep saying this is what your sister signed up for, as though that justifies keeping her locked into this caregiving responsibility even past the stage of burnout. But I think this is probably not at all what she thought she was signing up for, and I don't think it's really fair to hold her to an agreement she made 30 years ago when so few of the facts were actually known.

She has made is clear that she is burned out. Knowing that, if you were my brother, and you "had to" tell the discharge nurse about my agreement to let both parents continue residing in the home until they died, I don't think I'd ever speak to you again.

All I can say is that your sister did sign up for this and was not bullied into it as so many caregivers are. She still has her eyes on the prize at the end of time but it could be another ten years.
She has given up the best years of her life for what? Is it for the privilidge of caring for her parents or for the thought of the house when they are both dead.
Of course she is burned out anyoe would be, but has she considered the possibility that the parents may need medicaid and the house will have to be sold. There is also the problem of her not holding a job all these years and not getting much if any social security.
No easy answer to this one I am afraid.

How does being out of state work with being POA? I would think that would be a challenge. Are you both POA's or just durable?

Can't your parents pay something for the help they get?

My older sister and her husband have lived with my parents for 30 years. They raised their 29 year old daughter in the same home. The idea was, they would help take care of the house and when the time comes, my parents would sell the house to them at a discount - with one condition: my parents would be allowed to continue living at home. However, the idea of who would be the primary caretaker was not clearly defined, but implied - my sister would continue helping out. My father is now 93 years old and my mother is 87 years old. About 4 years ago, my mother fell down and broke her leg. We all pitched in to install a chair lift for the stairway to help my parents navigate the house. My father remained very active and continued to drive himself to the gym to exercise on a daily basis - up until he was 92 when he began experiencing fainting spells due to a benign respiratory fibrosis that only occurs when he tries to stand up too straight. Recently, he tripped and fell down, breaking his hip. He survived the surgery and 20 days of rehab in a skilled nursing facility. We all anguished over the possibility of placing him in a nursing home. However, he surprised everybody and rallied once again - constantly saying that really wants to go back home. My sister was lobbying for the decision to be made in favor of the nursing home and she found an ally at the skilled nursing facility - the manager in charge of approving discharge. I had to inform that person of the "arrangement" between my sister and my parents. After a home assessment, my father was allowed to return home again. Not surprisingly, my sister is finally experiencing caretaker burnout. The problem is - this is what she signed up for. My wife and I began suggesting that my parents move to a "patio home" or independent living facility about 4 years ago before they started to experience significant decline. However, my sister and her husband wanted to stick with their original deal. My parents absolutely love living at home - they have a large garden room and my sister prepares meals for them. We have done everything we can to equip their home, including bedside potty, shower bench, grab bars in the bathroom. My father is getting around in a wheelchair and he is so happy being at home. The wheelchair allows him to be ambulatory, however, has occasional bathroom accidents requiring clean up. This annoyance, along with the laundry and frequent parade of skilled home assistants - is, not surprisingly, causing my sister to experience burnout. Once Medicare benefits for home assistance runs out, we will have to pay out of pocket for helpers to visit for showers and home cleaning 3x per week. I realize this is a weird situation. My sister frequently complains about the many tasks required on a daily basis. However, the truth is - this is what she agreed to. We have one other brother who lives nearby and helps on a very limited basis. I live out of state and I'm the power of attorney for my parents. We have 2 other siblings who live out of state. I feel bad for my sister, but it seems all I can do is provide encouragement and a shoulder for her to cry on. Each time there is an emergency, I fly home and help out for limited periods of time. This ordeal makes me realize the care-free bliss we enjoyed through our forties. It turns out, the most important asset through this whole process - we are a family of strong faith. This has helped us through the difficult times and brings great fruits - peace, love, hope, joy and perseverance.

That is true, NewMember. My brothers seem to be put off by the person my mother has become. Even people who see my mother kindly talk about her like she is a poor, pitiful thing. I don't want people to see me as pitiful. The last thing I would ever want is people feeling sorry for me or to be a burden on anyone. I hope I pass before that ever happens.

It has convinced me that there is more to life than longevity. My mother is 88, with strong vital origins but dementia, anxiety and general hopelessness and very little interest in doing much of anything for herself. I would rather be dead than to have her “life,” which is really nothing more than existence.

I, too, have suffered the plight of being an elderly caregiver to an extremely elderly parent. I do not profess to have any of the answers to this difficult situation. Rather, I can only state my observation: This is the consequence of the extended lifespan some people experience as a result of the advances in health care and pharma care. Mankind was not meant to live this long! The mind wears out; the senses wear out; the body wears out--and yet some people just keep ticking. It's no picnic for them, nor is it pleasant for their children. I am soon to turn 70 years of age and live with multiple heath problems. I expect to follow along more like my father. He died at 72. I, do not expect to live to be anywhere near my mother's age (98 and counting). I am tired! My mother has put me through the wringer with her abusive and combative behavior. I know, I know, "This is not your mother; it's the dementia!". Do I not deserve to enjoy what remains of my life? Yes, I do. Does Mother deserve to have someone look after her? Yes, she does. What to do?? .......what to do!

You are not alone! I agree, modern medicine is a curse if it prolongs the lives of sick, debilitated old people who I see everyday now that my mom has had to go to a nursing home because she is totally bedridden. Everyone who thinks they are going to live into their 80’s in perfect health because they eat organic and don’t drink and don’t smoke and excercise need to hang out everyday for a few hours an entire week and see if they want to live to endure what I see daily! Just because you live “right” doesn’t mean you won’t get dementia, RA and genetic malfunctions! I feel like you do most of the last 6 years.

Accepting the role of caregiver must be ones own personal choice as one does not owe their life to another no matter what. We both resent having my husbands father interrupting our lives for 10 years. That is 10 years of our lives forfeited to another person who lived his own life to the fullest and his daughter who feigned excuses for her share of caring until it came to estate then she demanded equal shares.
As you can see resent reigns so make your terms known do not just let guilt and "responsibility" rob you of your life. We both arranged to prevent ever having to place such a burden on our own children visit us yes but do not give up your lives and the lives of your children for ours

YES.
I am no longer afraid to die.
But I am afraid of dying badly.
I know now that I will not suffer, that I'll age in place and die at home. If I get to the point that I'm a daily burden to my spouse and kids, I have a Plan B.
I won't make my family suffer just so I can live to be 100. My plan is to live until 85 at most, then check out quietly 'in my sleep.' Unless I'm very ill at a younger age, that is.
Living long enough to be a burden is not living at all.
That's how caregiving has changed me. 🙂

Well said Patooski. It makes us realize life is short and if not now, when? Live life to the fullest while we can so we can look back and at least say we had one h*ll of a ride.

This is an excellent topic. Caregiving definitely changes our lives. It used to be that families were closer and many times an aging relative would be kept in a house where a couple of generations were still living and there were many people to help. Not so today. It is definitely one of the hardest things many of us will ever do. It took a toll on my own health but I wouldn't change anything. I was able to have a good relationship with my father, which had been difficult earlier. It makes me think about my life and choices in it. It makes me question some things - even relationships. It makes me not want to burden anyone with my care. It makes me want to be healthier, but it is a difficult thing right now because of some depression associated with caregiving. It makes me want to simplify my life so no one will have to deal with my "stuff" later. It makes me think about giving away money before I die. It makes me aware of my own age and what the next few years may hold. Makes me appreciate what I do have and think about how I want those years to be. Makes me realize what is coming. I'm 70 - 10 years maybe? I think ok, figure out what is most important and don't take life for granted. If there is anything you want to do, you had better do it now.

Just now thinking - maybe a robot and self driving car would be nice - ha. Not in the budget.

Caregiving shows it daily that old age hits hard. My mother was a completely different person 10 even 5 years ago. Going to make the most of what I have.

Cargiving for my Mother has been a beautiful way for me to say thank you for being there for me and my makes the importance of being a nurturing caring loving parent myself greater. An understanding the nature of illnesses can be challenging to keep a positive mind when there family and giving back is the importance making there life easier. Feels like there my emature children and it makes me feel good.

How has caregiving changed your views on life & aging? I do not want to grow old.

My Mom lives with me, has for 6 years now. Her dementia is getting worse gradually and now I am at a point where it just makes me sad. I mean really sad. I do work full time so 2 of my brothers and my daughter come to my house everyday to spend time with her and make sure she takes her meds and eats, but the everyday stuff is all me. I used to get irritated and angry when I had to repeat answers over and over again and then my Grandaughter reminded me that she cannot help it. It was like a slap up side the head. Now I just get sad that she is not the lively fun loving Mom that I remember from earlier years. Most of her memories now are from her childhood and she speaks of missing her parents quite often. Now I just spend time with her and leave the arguing and frustration behind. We all only have one MOM so just Love her and do what you can. Hang in there !

DD,
Just reading what you wrote brought tears to my eyes woman. I do understand your feelings as we are the ones who stepped up, we deal with all the day to day bs, our sibs who are uninvolved bring them some cheap trinket and they fall all over themselves like it was sooooo thoughtful and then they resume going back to their lives. We do all the gruntwork, make their lives as pleasant as we can, try to push down the old wounds and feelings that tend to resurface when things come up, it's hard sometimes. But......they are our Mother's, for better or worse, we clean up bodily fluids, do laundry, shop for em, taxi them, take to doctors, handle their finances, on and on. You have become the parent to your parent and it feels like they are the rebellious teenagers who don't want you telling them what they should or should not be doing. It feels like resentment instead of gratitude. Why do we constantly seek out our Mother's love and appreciation? Mom does tell me how grateful she is when I finish doing stuff for her but it goes in one ear and out another with me. I just smile and say "your welcome" but the ugliness that resurfaces with my badbro, could have all been avoided if she just stuck up for me and herself instead of keeping her mouth shut and allowing it all to happen. That is the hardest pill of all to swallow. Too late for that now.