How has caregiving changed your views of life and aging?

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.

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.

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 Once we've reached a certain point, how much better to have all medications and treatments withdrawn and comfort care provided only, prohibiting the unnatural prolonging of suffering and allowing a peaceful death.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.

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.

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.

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.

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.

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....

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.

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.

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

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 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.

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.

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.

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.

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 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!

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!

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.

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 : )

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!

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.

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 ? , .

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!!

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."

You handle things that are within your control.

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.

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.

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.