How has caregiving changed your views of life and aging?

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.

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.

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.

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?

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.

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.

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.

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.

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.

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.

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.

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?

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

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 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

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.

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

Right there with you crazy wife

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.

Very honest Gershun. Yes life looks different afterwards. Grief counseling didn't help me much either. My sister who sometimes helped me care for our Dad, in spite of her own illness, used to joke and make me laugh. She was always so funny - a comedian in the family. The minute our Dad passed that all changed. Her sense of humor seems to be gone. Our relationship is different. We aren't sure what it is now. Or who we are now.
The history, the images, the sense of loss and just plain pain are beyond words sometimes. We've been close to death. It does change everything. I support you in your feelings.

patooski, cute name by the way. Yes, I am nothing if not honest. I don't see the point in being any other way.

Yes, the images, the loss, the pain..........it's really hard to get past those things. I hate it when people say "let it go". Let it go where? I think letting it go is just another way of saying block it out, compartmentalize. Sorry, but it's not that easy for some of us. If it is easy for you, lucky you, I say.

I lost a child when I was in my 20s. My initial reaction was to push away my husband and daughter because I never wanted to be that vulnerable again. Thank God I eventually started letting people into my heart again. Now, I'm taking care of my husband. Yes, it is hard. Yes, sometimes I even rail at God. But when I look back at the joy that my loved ones have added to my life, I know learning to live and love again was the best decision I ever made. Do I want my children taking care of me at the end? Of course not, and I will make arrangements for my end of life care. But I can't imagine having lived my life without them, even the husband whose butt I've wiped for the last two years.

You handle things that are within your control.

I appreciate a loving family life between myself, my Mother, Kitty cat, and my son. Mother said today to a friend in a Senior Facility who complimented me on being such a loving daughter taking good care of my Mother, "Yes, she is always right by side." It is true, I or my son or caretaker are always by her side."

I’m 73, an only child and married to a presently 83 yr old man for the last 36 years. Both sets of grandparents died in their 50-60s except Moms father who was well into his 90s when he went. Moms healthy, but totally narcissistic and suffering from dementia after her husband of 35 yrs passed away last year. She’s been married 5 times over the years and never once considered me in any of her decisions during my growing up years. I left home at 18 and never looked back, resulting in living in a different state after I married and raised my 3 daughters. When my husband and
I retired in ‘97 we decided to live closer to my Mom and her husband. We lived there for 18 yrs until we were able to sell the house (took 10 yrs!) and
Move back closer to our kids. No sooner than we get resettled than my stepdad dies. I knew Mom was getting dementia and they both had drinking problems. No amount of talking, cajoling
Or reasoning could get them to “make plans” for their old age
And
My mother’s dementia were both in total denial. We couldn’t take the
Frustration and decided to “ leave them to it” since our help and
Suggestions fell on deaf ears. After my stepdad died of a stroke, my husband and I went Back Again to care
For her. She was getting worse. I got POA and Health care power. We tried for 6 months to get her into an Alzheimer’s care. She was so totally in denial, and fought with us sometimes physically, screaming at us, throwing wine glasses at my husband, forgetting to care for her pets, waiting till we were asleep so she could dress up and
Go to the nearest
Pub to wait for her husband to join her. She insisted he was NOT dead, etc.
I FINALLY got two of my daughters to fly up to NY, take her “on vacation” to Texas and an Alzheimer’s Care home where she is today. Hell? I can tell you beginning with my birth, there was always some kind of drama, manipulation,blame and
Guilt
Inducing activity wherever she was. While inNY at her home, I was rushed into Emergency for a rupture disk/ spinal fusion, my husband almost left me and I was trapped into being her ONLY caretaker. I realized that if I continued to live with her, it would probably kill me. I COULD NOT DO IT ANY
MORE. I sent her to 24/7 care in TX (yes, she was mad!) as she could not be left alone and
My life was going to s%*#t. I had an estate sale, sold her house for $ to care for her, set her up a Trust fund and an investment account to make $ for her care and moved back to TX AGAIN to an adult Apt complex WITH my husband and WITHOUT her being too close. My children and grandchildren visit her often. I’m in process of getting ankle reconstruction which began after I rupture a tendon while cleaning her house in NY! I see her every 4 weeks and send her cards or talk to her often, but I ALWAYS keep a good portion of myself separate from her so she can’t manipulate me ever again. My problem is.... she’s physically strong and at 93, looks like she will last a long time. I’ve done what I promised...that I will do whatever I can in her “best interests”. But I have to tell you it has been a physical and mental ordeal. I wish she would take her final rest sooner than later. Dealing with this has nearly killed me. People, if ANYTHING, you MUST maintain control of your own lives. Make plans for your OWN elder age needs. Use your logical smarts to care for your LOs if they cannot. Do your duty as a caretaker , but set things up for yourselves too. And above all DONT FEEL GUILTY. They’re damn lucky they have YOU!!

Totally understand Doctors are making it miserable for us children to even have a life at all .. keeping brain dead old people living,, is what they do best now .The kids are weaker than their parents from fast food diets . lol Someone should bring a lawsuit when they implant pacemakers in dementia patients who are 96 . Their Kids will die first and who will take care of grandma ? , .

A baby is different, they are helpless but with our guidance they quickly increase their autonomy as they age.

With our ailing parents, they are helpless, and it’s just going to get worse until death frees them. That is very depressing to witness as well as experience.

Hands on care of a parent or a spouse is so difficult. The caregiver feels alone and overwhelmed and ANGRY. For me the anger comes from a lifetime of a cavilier attitude toward me from both parents, both were/are overly critical of me, unceasing in their negative nagging and they’ve had a cool attitude towards me most of the time, since I was a kid. I’m not saying things were only bad while I grew up but they did kill my self esteem. I worked hard to regain a positive mind set and was reasonably happy UNTIL they announced I had to do something because they’re lives were falling apart. I have done my best and my mom is in AL and is doing well. My dad is another story. He calls continually talking about taking my mom out of AL and bring her home. My mom needs more care than can be provided at home, she has dementia and wanders and is confused a lot. My father through not knowing how to care for her had had her in a neglected condition.

I could go on all afternoon but I don’t like talking about it. I do have the ability to detach after I go home and don’t see my parents so I can relax. But I’m also disabled and limited in my own physical tasks of daily living. And yes, my dad demands I trot around all day while he criticizes what I’ve done. I think he’s going into AL soon, he’s emotionally whiny which alternates with raging at me. I dread handling the estate for them, I’m talking to my lawyer about it.

Yes, I also would rather be dead than put my daughter through caretaking. I’m considering what I’ll do when I’m inevitably worse with my own ailments. Maybe the laws will be on my side by then and a graceful and dignified death can be obtained.

JoanieTee, Good for you for making the decisions that you did and being so strong. Caretaking is difficult enough, without the history that you had and had to overcome. I hope your Dad can get into AL and that you can get out of the executrix role. Believe me that will do a job on you too. More power to ya, as we used to say!

As in everything, we are rooted, grow, develop, bloom, wither & die.
As are the seasons. We live through phases, self, develop, grow & reap.
It is hard watching your once super-active parents or partners wither.
And I too fear that for myself. I would rather not get that old if I am going to be incapacitated.
My mom passed fairly quickly after a heart problem, but my dad taught us so much with his dementia followed by strokes and the loss of his vocals.
I cry now when I think of it and it is now 16months since his passing.
One can only wonder why and what it all means. As a spiritual being on a human journey, we endure so much. (Gosh and then there are those who add to another's already misery or hardship) Good luck to all. Melancholy : )

My boyfriend and I's mothers both had us in their late 30s. We're nearing 30 ourselves, so my mom is 64 in a few months and his just turned 65.

For a stark contrast:

My mother is the picture of health and keeps active and is in great shape and is the caregiver for many other elderly who need help with doctors appointments, etc.

His mother has never financially or physically cared for herself and has been diagnosed with Parkinson's and a host of other problems and has completely given up on life.

Going through this, I've also considered whether or not I want to have children. My bf is the only real caregiver for his mother and I see the stress it causes him. I know now that if I don't have children by 33, I'm not going to have them at all because I don't want to possibly be a burden on them while they're in the prime of their life and trying to have their own families. We never thought we'd be taking care of a parent before we even had our own children.

It's also made me much more serious about saving for retirement and being frugal. His mother has terrible credit and the only thing she has to live on is part of his father's pension from their divorce settlement and very small amount of social security. We've recently discovered she has debts that total more than her annual income and has several accounts in collections. I do not ever want to be in that situation.

I think if you would like your own children, don't be afraid because of your age. The fact that you're even thinking about the consequences down the road seems to suggest that you are proactive in taking care of yourself. And to me, it's not the age so much as whether someone takes personal responsibility to take care of themselves physically and financially that matters most.