How has caregiving changed you?

After 15 years of caring for my mother, with most of the time spent watching and trying to protect her from falls, make all her dr appmnts, cook what she 'wants'... which is mostly starches/carbs... and, she did break a hip a few years ago... <took her to numerous PT's> and then she developed afib with uncontrolled BP ... She has grown more and more distain for me because she likes to be in control 99% of the time... While I learned recently that my own health became a health risk after sleepless nights and eating too much of the wrong things that I had to prepare for her... carbs... My dr said I must change my eating and lifestyle... I believe my cortisol levels also started to go crazy with my body. Yes, I was scared and am presently trying to reverse the caregiving damage that slowly crept up on me. As my mother has a way to always make me feel inferior and 'bad'... like saying "It's a good thing you're not married!"... which floored me... How can I say I'm a better person for doing all of this? Sometimes... probably more than we know and with all good intensions at first can create a recipe for heartbreak and distruction... After all these years, I can't say I've done the right things and have lost many years, opportunities, etc. and the hurt from my mother is beyond imagination. How does one pick up after going through this?

A.A. has 12 steps but Caregiving has 16 to the Nth power of steps. Caregiving changes each one of us in a very unique way but then again in the same way. We cry seeing that the one who raised us is fighting something out of their control. We Scream at the top of our lungs at times because we cannot fix what we know is Incurable. We get overwhelmed at the tasks we foresee yet we look back at how far we've surpassed those burdens. To quantify "How it's changed us?" is as immeasurable as it is unique. Everyday; whether caring for our LO or not; will change us. It all boils down to "Has it changed us for the better?" Are we smarter because of this? Are we more empathetic bacause of this? Do we understand ourselves better when the day is done? If we can answer "Yes" to these questions, it means that everything we've done, every time we've beaten our heads on the table because we're so frustrated. every time we've thought we've done all we can do then do more is verification that our LO have instilled in us the same value of life and Love that have for Us. We are giving them the fruits of Their Love for Us in return.

Yes, loss of one's identity... That's how I feel after so many years of 'loving' but intense 'pleasing' and caregiving, whereas, she mostly came 1st and everyone (who lived far away and never helped) catered to her... and, then I carry the 'guilt' of everything... How does that work? Oh yes, did I mention because of my poor eating habits due to lack of time for myself, I had very bad test results from my resent physical?... I guess that's why many caregivers die first... which I never planned on when I took this on when I was in the prime of my life and just getting ready to enjoy life and go on with my dreams after working so hard from age 15?...

(Be very mindful of your health... Stress is really a killer.)

Thoughts: I've been wondering if our generation (I'm 70) had been conditioned to expect too much of our lives in that when we are caregivers we feel a strong need to get back to "our own lives". What if this is life? Child to adult, raise children, have a few years of total involvement in our careers, then taking care of parents as they took care of theirs. I'm thinking I might have used those few years of total involvement in my career much better while I had the energy if I knew then what I know now. My parents had jobs, not careers, so they would not have understood my frustration. And I'm pretty sure my sons are not going take care of me. I certainly would not want them to after going through this. It's a very different mindset than my grandparents and my parents had. Or is it just the dementia that is so hard? My grandparents and great grandparents were sharp until their deaths. Their issues were physical.

My life since taking over all parts of my mothers care after she had a stroke (caused by a freak accident) has changed dramatically. Here are some things that have changed for me:

1. I feel proud of myself that despite knowing nothing about hospitals, insurance, or medicine that I did what was needed and got my mom the care she needed and was able to move her in with me as soon as I could.

2. I feel profound terror that because I am only working and caregiving that I am missing any chance at all to find someone to share my life with.

3. I have depression that stems from the fact thst have no life now. I literally have the 30 minutes ( 15 minutes each way) of commute time to work that is “my time” yay! Traffic and road rage for a relaxing 30 minutes. I can’t do anything unless I pay a caregiver and I don’t ask for weekends because I don’t want to burn out her 8-4 caregiver that I have while I am at work.

4. I know have this dread for my eventually future. Knowing that there will be no one to take care of me in my old age and that I hope I have the mental capacity to take a bottle of pills before I am left alone and miserable in some crappy nursing home.

5. I do feel happy that I can give my mom loving care since she was there for me.

6. Feeling greatful that this happened now because if this would have happened before my new job and move out of state. I literally could not have supported us both.

7. I am much angrier now. Not towards my mom, but this is hard. It is hard on my mind, my body, my soul. I am trapped in a never ending cycle it seems.

8. Guilty that I get upset when she is mean or forgets who I am. I feel guilty when I get mad when she rolls herself over while I am changing her. She doesn’t understand and I know that, although sometimes you just have to get annoyed to stay sane.

In short my life has changed A LOT in the last 1 + years. I wish I could wave a magic wand and mom would be all better.

Caregiving has changed me in a lot of unfortunate ways. Although my situation is temporary (I hope) I realize that:

-I don't want to go out and do something "for myself" because when I get back my caregiving duties start all over.

-I don't have time to take MORE time away from work to much needed doctor appointments of my own,

-I don't eat when Im stressed or upset.

-I'm not 25 anymore.

-The relationship with my mom boils down to her controlling me, she always has, and now she really can.

-I love my husband, dog, and house more now than I ever did since Im away so much.

-The sight of a commode, or a commercial for a walk in bathtub makes me want to scream til there's no voice left.

I want my mother's aging to be dignified, as I would for any of my loved ones. I just want her to want that TOO. So far, it's not.

Cant Dance, thank you. That is a beautiful post. I'm going to print that out
and use it to remind myself to let go of stuff I can't control :) . Thank you!!

Caregiving broke me. Totally and utterly. I'm now rebuilding myself and although
I'm not on the other side of the damage (some of it will always linger in terms of
physical damage it's caused) but I can honestly say I'm grateful for what it has
taught me. About myself, my father, about human nature (even though a lot of
that has been fairly negative) about learning to love every day as it comes because it may well be my last. And most important to stop giving headspace to negative toxic people and start living my dreams!

Thanks again for great topic!

I can’t recognize myself.

Caregiving has changed my way of thinking regarding aging. I used to think living to a 100 would be pretty cool. Not so now. My mother is 97 and going strong physically, but mentally she's a basket case. Why is everyone so obsessed with a long life? Sure, it'd be great if you and your loved one were independent, healthy, and financially secure. Not so great when one or both gets dementia or disabled and needs full time care. At 75, I've already told my children when the time comes I do not want to live with them. I hope by then I will have already picked out my living facility and am settled in. I have two widowed friends who swear they will not leave their homes...ever...mindless of the burden they may put on their children. Unfortunately, good genes run in my family on both sides. I pray I don't run out of money before my time on earth is up.

I've been taking care of my Alz mother for over 2 years now. I learned a few things during that time.

1. Parents should try to take care of their health as much as possible. If they don't, then it's the children and society that bear the burden.

2. Parents should try to save for their old age as much as possible. Unless they plan to die young, everyone gets old and sick, it's not a surprise. Don't put the burden on the children and society.

3. If there is still no cure for dementia/Alzheimer's disease when I reach 70s or 80s, and my body is wearing / breaking down, I won't be so quick to fix it. Why have the heart surgery, or chemo or whatever else the doctor can do to make the body keep running a few more years, just so that the mind can deteriorate. Then with more modern medical miracles, the body can live on and on like a zombie with no soul while putting a tremendous burden on everyone around. I will take the exit that God gives me, be it cancer or heart attack or something else.

4. It is wrong to burden someone for years and years and take away their lives just so you can live on.

5. It is not natural to have to take care of someone for years and years. This is why most of the caregivers suffer burn out.

Caregiving is a big burden. Whoever says it's a privilege is lying to themselves.

This topic kind of reminds me of another situation which is sort of like caregiving. Tell me what do you all think of children in large families, the older ones constantly looking out for the younger ones. I have had friends tell me they hated their parents for making them babysit their whole lives. Some chose not to have kids of their own due to that.

Caregiving changed me from a happy, productive and optimistic woman into a bitter, worn out, pessimistic wretch. I used to live each day fully and eagerly looked forward to the future, but that soon evolved into dreading each day as it dawned.

Sounds pretty drastic, doesn't it? But that's exactly what happened, until my husband sat me down one day and said, "We gotta do something about this. Your mom's turned you into a nervous wreck."

Mom has lived with me for 10 years, the last four of which have required constant caregiving, including medication administration 8 times a day, meals, dressing, bathing, changing Depends and cleaning her after toileting, not to mention laundry, linens and cleaning. She is 86, severely disabled, legally blind, partially deaf, and bladder/bowel incontinent, and her personality dictates that the world revolve around her and her needs.

The worst part of caring for an aged parent is the parent-child relationship. Mom still sees herself as The Mother of the House, and I'm still 14 years old. It's often difficult, if not impossible, for a parent to relinquish authority over the child, even when the child has reached the age of 61. And it's harder still for the child to exert necessary control over the parent.

I felt sorry for Mom. She had been quite active and productive in her younger years, so I tried to put myself in her place and be as compassionate as I could - and that led to giving her free rein over her time (and mine). She got up when she liked, ate her meals when she felt like it, and went to bed at night when it pleased her to do so. As a result, our entire life descended into chaos.

My husband's intervention made me realize that I had to quit being the child and assert myself. My house, my rules. As a retired accounting professional, I know the value of conducting business in an orderly fashion. Running a household, with or without an elderly occupant, is no different, and if you allow things to get sloppy, the whole mess gets out of control in a hurry.

As a first step, I finally devised a strict schedule for Mom to follow. Out of bed by 8, breakfast by 9. Lunch at noon. Nap at 1, up at 3:30. Dinner at 5, bedtime at 9. This not only facilitates proper medication administration, but it also allows me to plan the use of my own time, whether it's for housework, shopping, errands or just pursuing my leisure interests of writing and photography. And I get to go to bed at a decent hour, too.

Mom balked at first, but I didn't back down. It's been about three weeks since I put the plan into place, and it's running smoothly. I no longer feel so burned out, resentful and just plain crabby. I feel as though I have some modicum of control over my life again. Life still isn't perfect, but it's a lot more bearable now, and that will make it easier to surmount the other challenges that still exist.

So the answer is not how I've changed - it's what I've learned from the experience. If you choose to accept the role of full-time caregiver (and sometimes there is really no choice but to do so), it is vital that you fit the patient into your life - not try to fit your life around the patient. It makes all the difference in the world.

I speak from many, many years of experience. I was a caretaker four times - for a dear friend for 28 years (while I worked full time); for my father who died when I was l9 years old; for my mother who was ill and who died when I was 33; and finally for my husband when he developed pancreatic cancer. I learned first of all that there are some things that cannot be changed - people get old and they get sick. Some people need help in different ways that family members and friends simply are unable to help for physical, mental, emotional, financial reasons. Other people who are ill and need help change in such a way that they are now abusive, mean spirited and will generally make the life of the caretaker hell on earth. I will tell you this. No caretaker, and I care not the reason or the relationship, is equipped to handle every patient, nor should they. If the patient's actions and behaviors are starting to destroy the caretaker, or the family unit, or otherwise having very negative and difficult consequences, then there simply is NO CHOICE but to PLACE THE PATIENT SOMEWHERE SAFE AND WHERE THEY ARE CARED FOR. I know finances are always a problem but I assure you there are ways to be found that it can be done. YOU, the caretaker, cannot have your life destroyed by another human being. You don't deserve that. They have lived their lives and now it is your turn. I learned that much too late.

I have been taking care of my grandfather a little over 2 years now and it has completely changed my world. I also helped to take care of my grandma who passed away a little over 2 years ago. After my grandma passed, to be expected my grandfather declined. Already dealing with Parkinsons,A fib, stage 3 renal, he fell and broke his hip over the summer and now he is 24 hour care with moderate dementia. I live with my boyfriend and my 2 daughters and my grandfather. I am no longer able to work and I have had a hard time finding good help through the aide agencies. My grandfather is completely attached to me and starts freaking out and getting confused if he doesn’t see me for about 2 hours or so. I have lost all faith and hope in family,friends, love, life. This has been so emotionally and physically draining. We are trying to get a live in soon. I hope things get better.

I cared for my Mom 17 years, and the last 2 years left me with no faith in other people. Very few people in hospitals or nursing homes were of help to us. I did have some wonderful people from hospice, but I feel caring people are the exception and not the norm. I am an only child, and all relatives on both my parent's sides are in Europe. My husband did help when he could, but his family was indifferent to our situation. After a fall, mom went to the hospital and then a NH for rehab. There she developed a serious UTI, delirium from it, and a stage 4 tailbone wound that I only learned about from the intake nurse when she was rushed from NH 1 to the hospital. From there she went to NH 2 where the staff was largely lazy when the director was not around. One stupid woman dropped my mom trying to get her into the wheelchair and broke mom's ankle. They sent her home with another UTI and delirium and back to 2 hospitals. After this a rehab in NH 3. That 3rd nursing home at least was good and they put my in touch with a wonderful hospice. I took mom home anyhow on hospice where she died a half year later. I learned how to give insulin shots, deal with urinary catheter bags, treat a deep stage 4 wound, and manage all medications. During this time all "friends" disappeared. After my mom died and they came out of the woodwork again, one friend proceeded to hammer with me bragging about her perfect life, etc. and still does to this day. I feel like I went through a war with my mom's decline, and have anger issues at those who failed me, be it NH or hospital personnel, friends, etc. It is scary how much incompetence is out there in dealing with old and sick people. I fear my own ageing now that I see the incompetence. I am trying to get on with life, but after witnessing this it isn't easy. It has been 3 years. This is how caregiving changed me, though I am glad I was there for my mom and tried to make up for the incompetent jerks out there.

Wow Cantdance! Your list is amazing and inspiring to me. I've been taking care of FIL (94) for almost 2 years now. MIL (93) died a year ago. At the beginning of December he all the sudden couldn't walk. With some PT they were able to get him walking again with a walker. He can't do anything on his own, except feed himself. He wears a diaper, doesn't know when he needs to go to the bathroom. I feel likes its been longer than just 2 1/2 months! I was really angry at first. Oh heck.... still am!! Why did I get stuck taking care of him? Why do I have to wipe his butt and everything else? Uuugghh! My husband helps, but he had hip replacement, so there is only so much he can do. I could go on, but I won't.

CantDance, this is a beautiful list, affirmative, supporting, gentle, and understanding. It is so easy in the minutia of caregiving to sink into blinding fear and anxiety at all the "what-ifs" that could happen, but your list is all about positive personal choices - to choose optimism, light, health, and future over pessimism, darkness, and loss. Thank you and bless you for sharing your list and starting this post.

my mother died 20 years ago of Alzheimer’s and my father hid the extent of the illness he didn’t want to be the bad guy by putting her in a Dementia ward. He always presented himself as the most wonderful husband He also wanted to spend her pension So the responsibility was given to me
i did not get along with my mother, she was only 66 when she went into full time care
i learned that is hard to take on the responsibilities for caring for someone you don’t like
resentment was palatable but I carried out my responsibilities as she was my mother. Besides who else was going to do it. My brother ran away to the other side of the world and avoided everything but I don’t blame him.
i learned that after her death my father was a big fat liar who was a compulsive gambler and gambled away everything all my childhood and my mother covered for him
i learned this woman I disliked was not the villain but the victim and my father drove her into the ground and crushed her soul
i saw my mother in a new light
then of course his turn came around and I learned what a selfish self absorbed human being he was. But again I cared for him right up until his passing last November aged 88 and I am not ashamed to say it was a big relief
now my husband has Parkinson’s with Lewy Body Dementia being his first symptom he was only 58 when it first started to show
I have learned that you are on your own and your in-laws turn on you quickly
my care giver journey has made me bitter, resentful and angry and I am tired of it
i have learned that I will not get through it this time without preparation for respite care and eventually full time care
i learned that nobody can understand what being a Carer means until it happens to them

You captured every single feeling I went through during my mom's ordeal. Lots of feelings to sort through during and after.

@CantDance, what a treasure to read #16! So much growth recorded in your list; kudos.

As for me, caregiving for 20 years after Spouse's diagnosis of cancer (recurring in 2009 and 2011) made me realize that if I'd pursued my dream of becoming an LVN in 1970, I might not have made a go of it because it sure is a struggle to do elder care. Or I might have! Having fellow workers share the burden of caring for the elderly and infirm would make all the difference, but I will never know for sure. I've wondered for a year now what direction my life would have taken as an LVN.

The initial plan for senior year high school included afternoons working at a NH after mornings in the classroom completing my credits for graduation. I prepared by reading nursing books through the summer; in the fall, the counselor said the county program had been cancelled. I substituted business classes.

The one thing I'm sure of is that I have gained more patience between 1970 and 2019 after doing child care 1978-2004 and elder care 1999-2019!

Thanks for a thought provoking topic.

After 7 years of taking care of my Mom, I learned compassion, unconditional love and patience.
I learned worry, changes nothing and makes you old before your time.
I learned getting old is extremely expensive.
I learned to take great care of myself and avoid doctors, hospitals and pharmaceuticals at all costs.
I learned attitude makes all the difference in the world.
I learned the key to good health is thru nutrition not drugs.
I learned to say no.
I learned my siblings suck.
I learned getting older is not for the feint of heart.
I learned God has a plan for all of us, and regardless of what we think or do He is in control and has our back.
I learned each day is a gift and to live it with joy, because tomorrow is not guaranteed.
I learned laughter truly is good medicine and enjoyed it often. Especially in the mist of a crisis.
I was lucky, my Mom planned for her old age and made sure she had everything in place and all the legal stuff done way before it was needed, which I have recently done so my daughter does not have to worry about it.
Now when I do things I think of how will this effect me when I’m older, will it help or be a hindrance?
Unfortunately, I’m gearing up for round two as my husbands health is deteriorating by the day and refuses to take better care of himself.
But, I thank my Mom who gave me a preview of things to come so I can be better prepared. And yes, there will be many things I’ll do differently.
But the most important thing I have learned is that I’m not alone and to fully rely on God and give my burdens over to Him.
As hard as those 7 years were, I believe they made me a kinder, gentler more understanding human being and for that I am extremely grateful.
I love my Mom and miss her so much, I’m just glad I was able to be there for her when she needed me the most.
Caregiving made me a better person!

My caregiving has ended. So my response is going to be it has made me reflective.

What I have learned from being on this site is that I am not worthy of the name "care giver!" Several years ago I took a position as a live-in for a woman dx w Alz, but she was nowhere as far along in her journey as some of you are describing as your family members. No, she could not be left alone, yes, she put things away in weird places, yes, she needed help dressing, showering and with personal hygiene; yes, she repeated questions and conversations and drove her daughter to distraction, etc. But she was an absolute dear to be around and none of this bothered me a bit. Eventually her other kids took her to live with them in another state before her dementia became too severe.
I loved her, and caring for her - sorry, looking after her - was a joy and a privilege.
Recently I lost my mother-in-law of about 8 years. She was only recently beginning to show signs of mild cognitive decline. In no sense was I her caregiver, and she would have bristled at the very suggestion. It was probably a good idea for her not to live alone in case of a fall, and at 90 she did tire easily, so I know I was a help to her.
But not like you guys who are really in the trenches. You have my respect and I salute you. I am also learning so much from you. I came here because I thought I was going to need your advice and experience with my MIL. Obviously I'm not, but now that I've met you all I hope you don't mind if I remain part of this community. You'll be a support to me in other ways. Thanks.

wow... great post...
I'm still learning,,
I learned to have "thick" skin
I learned its ok to cry alone
I know what needs to be done, ahead of time for when I am older
I hope to age gracefully, with positive attitude, and accept support

It appears I posted my little meltdown on the wrong website, as most of you seem to be the HANDS ON VARIETY caregivers. But it changes nothing in how I feel about the ones that pass the buck.

I would like to see another name adopted for people who although they may take care of financial responsibility and visit their loved ones in homes for the elderly, they are not caregivers. Caregivers are those of us who take care of someone 24/7 with no help from anyone. There is a big difference. I am sorry if this sounds petty but when you have done this job for four years for a grandparent then 14 years for both parents and two years for your brother, you will know there is a difference. These were all done at different times, thank god, or I would not be here to object. I find I can not sympathize with many of you, as you sound so sorry for yourself it bothers me. Why do you even bother, just walk away, let some one else do the job, that is what you want to do any way. Your life is so much more important than theirs. I pray if you ever need help some one will not think so much of themselves that you are put out to pasture before your time. I always thought of it as a privilege to be able to help some one who took care of me when I was too small to do so for myself, but after reading this column I am beginning to think there must be something wrong with me, that I would actually think of some one else before myself I must be crazy.

EssieMarie:

I'm sorry you feel like you've lost your creative spark. You haven't, really. There's a little pilot light inside of you still burning, waiting to ignite when you're ready.

When my train wreck happened (father's death and mother's decline), I was forced to abandon a cherished creative effort. For 2 years it lay neglected. I felt like my creative spark was snuffed out by grief, constant worrying and responsibility. I had a lot to work through. After many months, bit by bit that spark re-ignited on it's own. I didn't tell it I was ready. It told me IT was ready! And along with it came new insights, courtesy of the mind-numbing, heart-crushing ordeal I'd been through. I'm tired. I'm humbled, but richer for it.

Don't despair. It'll happen in its own good time. (((Hugs)))

Four years and eight months of no sleep, unending demands, verbal abuse , throwing stuff and screaming she hates me, and endless tantrums has sucked the life out of me. Cost me the money I had saved for retirement and ruined my health all because I was left stuck with someone who never cared for me at any time in her entire life. Left me at two months old.
I am sending her to the first nursing home I can find. I want to be able to work what little I can. I want my life back. I want to be able to go to the doctor, the dentist, to leave the house and see my kids. I owe her nothing. I treat her well but I absolutely despise her.
I'd never do it again, I should have left her in the mess she made, given it to do over I'd never have taken her in, never.
Thats how it changed me. I have no guilt, I did all I could for a vile person who deserted me. I'm, done.

In addition to everything that has been said, I have learned to accept help. Financially, emotionally and physically. By accepting help, I have come to understand that as much as it blesses me, it blesses the giver as much if not more. I have also learned who is for me and who is not. Friends and family are not necessarily supportive for many reasons. Sometimes it is selfishness, sometimes it is because they cannot cope with a crisis situation and sometimes it is just because they don't understand and don't even try to understand. Regardless, these people, no matter who they are, no longer occupy a place in my inner circle. I haven't cut them out of my life but I don't have the time or patience to walk a mile for someone who cannot walk a foot for me. What is that saying? If you can't handle me at my worst you don't deserve me at my best.

This is a great list. Mine would be a bit different after 7 years of caring for my mom, but much is the same as yours. In the 10 years since her diagnosis she seems to still be in the middle stages of Alzheimer's at almost 90. I find I am a very different person now. I have friends who are interested to hear about my mom's journey and others who think I am just making excuses for not living my own life because of her.

For whoever has posted and might read my post, may I use your words for an art project I am working on, painting portraits of care givers. It has occurred to me that anonymous statements from you as part of the exhibition would be powerful as well and add to understanding of what care giving really is.