Experienced CGs - does there ever come a time when you finally say - I get it; I understand this struggle; I’ve learned from it?

I have lived with my mom 17 years..I am fried..absolutely. My mom is 94 mentally fairly with it. She is a fighter and a busy body..she enjoys negative attention and seeks it out quite often. I also work part time, because I have to..I live with my housemate husband, we all share the house., he does help the best he can..
W had a very terrible fight..we have them a lot..she has always been a fighter.
I love her, but don't like her at all.! I know I would be much healthier mind and body if she were not living with me. I have no other family, both my brother's have passed.. Today we talked, ( screamed and fought) about nursing homes .. ugh.!
This is killing me.. ripping my heart out.. I told her I couldn't put her in a nursing home , I suggested she call and put herself in one.. Sometimes I just feel like getting in my van and driving away.. There is no joy.!

Imho, my "Ah Ha" moment never really came. Although I tried to amend my mother's elder living arrangements well ahead of crisis mode, it fell on deaf ears. She said "I am so glad that I stayed in my own home." My response "Mother, you've left me with a real dilemma as I live 7 states away from you, you are legally blind and your blood pressure is now causing you to pass out." I had to move there. I do not advocate this.

I like megdog's response. I have no idea how to proceed for future except by getting through one day at a time. Faith has sustained us. I'm in a wheelchair caring for my husband and home. I've asked for help - people don't answer the phone or call back. I suppose it is due to the virus and the fact that we have grown children who have ignored our needs for decades. They figure - why aren't their children helping. Well....we've never done anything to them to warrant how they are reacting to their dad's diagnosis. Probably scared. In a few months I will be using our savings to pay for lawn care (we have five acres of grass) which is money we want to use for caregivers.

When the children of Israel thought they couldn't do what God said to do - God said "Now, what I am commanding or asking you to do today is not too difficult for you or beyond your reach." I get a little more strength on endurance by reaching a little beyond, again and again. However, I know that our steps are ordered and directed by our Father and I trust him to give me wisdom as we live each day.

I am glad we have somewhere to hang our hat. So often God's word has helped me to be patient and kind, endure, prevail, and when needed to stand strong. We're going on 11th year and because of the covid it is easier to get groceries and ordering what we need - and we just finished a virtual doctor's appointment.

I do spend a couple of hours after my honey is asleep for my time to unwind. That helps a lot. Take care and every one be safe. I do get frustrated because I'm not physically able to do more - but thank God I can do what I can. You've got a lot of great comments.

My sympathies. Until you've done some care-giving it is impossible to know how exhausting it is--even part time. My experience is a little different from others posting here and I thought I might share a slightly different perspective.

When my mother started needing assistance I lived 3000 miles away. That was intentional. My mother had never particularly wanted me and although our relationship was a bit better after I left home forever at 18, we were never close. I was also not close with my sibs who were much closer to Mom. At first one of my sisters, the favored child, was the only one to assist my mother in her desire to live in her own house. Mom would call it "independent" but I sort of figure it is only independent as long as you don't rely on others to make it happen.

Long distance conversations about Mom ensued. We 4 sisters agreed that none of us could/would either live with Mom or let her live with us. We also agreed that we each had our limits and that boundaries would be essential. Not everyone had the same ideas about what those boundaries would be and we sort of agreed to disagree. My husband and I made a test trip to the small rural town where Mom and 2 sisters lived and we decided that we could deal with it, sold our house and moved.

I do the least for Mom. The pains of my childhood, though put in the past for my own mental health, still can rankle if I spend too much time with Mom, especially in her house. I run errands, leaving the needed items on her covered porch, due to COVID. I used to take her for drives and take her out to lunch to give Mom a break from the house and to give my sisters a day each week when they didn't need to think about Mom.

I have gained some understanding of why my parents could never quite accept me and I have managed to build a sort of friendship with her. It is limited, but it is some sort of glimpse into what family can mean. Even more important, I have learned to appreciate my sisters and I have bonded with them far more than was ever possible when we lived together. 30+ years of absence gave me a little distance from the troubles of our childhood and teen years.

I think that it may be better for some children to not even try to put in too many hours in caregiving. Ultimately, what we and our aging parents need the most is some unpressured time together to allow the still peacefulness of the calmer older years to let old wounds heal and to form new relationships of peace and forbearance. This cannot happen if the adult child is overwhelmed with the burdens of physical cares. In that instance, I think resentment is the natural result. I do not think that is ever helpful.

In my case there are four of us, so we can divide things up pretty well. 2 sisters spend more time with Mom and do things in her house, 2 of us are more just moral support and company (by phone, mostly, for the last year). Mom knows that none of us will attend to hygiene issues. When Mom can no longer manage for herself in her house she will go into whatever level of residential care is indicated. She will be unhappy about leaving her home, but we will not even try to do the impossible task of trying to care for her home as well as our own homes. One home is more than enough for us.

As for the "reversal of roles" I don't put much stock in that. I will always be the child. I would never try to tell Mom what to do as though she were the child. It simply would not work. She is not a child; she is an aging 96 year old who knows her own mind. There is nothing that either I or any of my sisters could ever do to make Mom "mind" us. As for the other familial roles, they were always a little fluid. We are still changing, and those roles must change to match who we are now and how the circumstances keep changing.

I am mostly contented with the choice I made to sell my house and move and mostly happy with the new relationships with my family, possible because of the limits set.

Not me, not yet. I look at it as having multiple (unwanted) opportunities to learn how to NOT react and keep my blood pressure low. I think the only things I really learn are what to try when it comes to challenging behaviors, and how to be supportive of others who will caregive in the future. I think if I were ever to be on a jury where a child was a caregiver and lost it, I would never vote to convict. Until you've been a caregiver and borne that 24/7 on call responsibility you just can't understand the stress and strain of it all, phyisical and mental and emotional. It's an indescribable exhaustion. And still we go on. Especially those of us with no family supports/absent siblings etc.

Ohhh, the things I learned while caring for my Husband!
That is why I continue to come to this site. To MAYBE pass on a bit of what I learned, pass on some encouragement, pass on some of the "epiphany" moments that I had.
A few things that I learned...
Ask for help. People want to help they just don't know what to do or what you need unless you ASK.
Accept the help that is offered.
Realize you can not do this by yourself. No one can be a caregiver 24/7/365.
Hire caregivers. They are not there for your loved one, they are there to help you take care of someone. And if your loved one does not want the help remember it is NOT for them it is for YOU. (and it should be your loved one that is paying for caregivers)
Don't doubt yourself. You make a decision based upon the information you have at the time. If you are doing the best that you can then there is no reason to second guess yourself.
If things become unsafe. (unsafe for you or your loved one) placing them in Memory Care, Skilled Nursing, whatever is appropriate, is NOT a failure. It is responsible to know when you can no longer care for someone safely.

As I read through all of these heartfelt and honest answers from all of you I see elements of what I am living through and may potentially experience in the future.

Outside of our current CCP virus world, I traveled extensively for work. I am grateful I had a caregiving service in place because they have been an enormous relief as work is now here at home with hours on the phone and computer. Mom has a tendency to call several times a day (I do not answer) or just pop in to see what I’m doing (my office is upstairs so I can’t always respond and usually don’t); she forgets that I still consider 9-5 my work day and although I may take a break to exercise the dogs, I’m still in work mode.

With that, one common theme I see that hasn’t been introduced is faith. As a woman who loves God, I know that it is biblical to care for our children and widows. My children are out of the house and I now assist in my mother’s care (I am her DPOA, she’s 89 and lives across the street and has dementia). The stress of being off road, being “available” at all hours of the day and my siblings too fearful to travel here for my mom has been overwhelming at times. This is where my faith comes in!

For all the pain, anxiety, best intentions of others not chosen for the task of caring for a parent or parents, there is no greater support system than our Lord Jesus Christ!! When the anxiety increases I realize that I have been slipping away from Him. It’s time to get back in His word.

When I meet our Lord at heaven’s gates I will know that He will reward me for my efforts with mom and others but He will also show me my shortcomings.....which He deals with me on this earth every day when I take the time to really ‘listen’ to Him and His written word.

Many of you will disregard this but there is someone out there that really needed me to share my thoughts.....and for that someone, I am here. I am here to lend an ear, help you back to Christ or to just help build your faith as we live through this moment in our lives. I will continue trying to embrace it with all the love of a mother (because this is what we have become) knowing this time shall pass and she will have moved on to be with the Lord.

As I sit here in closing, I’m thinking that maybe I needed this more than you because suddenly I’m feeling like I just preached myself happy! I know that I have a God who loves me so much that He’s available 24/7/365!
God speed fellow caregivers❤️

It really depends on the people involved. My grandmother was a very compliant, easy-going person and would go along with most anything and everything that I or my mom asked of her. My mother, who did the lion's share of care giving, had extremely low expectations of herself and the care giving experience. So, mom and Gram (her mom) got along well and had a decent time together. The "ah ha" moments were realizing that Gram needed to be at home in the evenings and in bed by a certain time... and "confused moments" usually had a cause (infections, low blood pressure, low oxygenation...).

If you find you keep saying "I'll learn something" from this stressful situation, I suggest that you need more help since you shouldn't have that much stress. Consider asking family, friends, members of faith community and paid help (agency, adult day program, residential care) to get some of your time back. You need to be able to eat 3 healthy meals daily at a decent pace, sleep 7-9 hours every night without interruptions, "time off" to take care of your own health, and "time off" to nourish your soul doing activities you enjoy with people you value. Being overly stressed keeps you from having those "epiphany moments" you are seeking.

Of course, yes. Lots of eureka moments! Usually just before the situation changes radically and you're back to square one.

Questions like this make me reflect on the past, and then I want to crawl upstairs and hide under my bed for shame.

I was vile to carers.
I was horrible to my mother.
I was bad at communicating with my siblings (they were worse).
I was clueless.
I was unreasonable.
I had the most ridiculous expectations.
I had no idea how to assess needs or develop a workable plan.

Eeeeuuuuuggghghhhghbleah.

Sigh.

I now work in social care, a humble frontline reablement worker at last learning to do the job properly. If every person did this or something like it as a kind of national service, for a year or so between the ages of 18 and 30, it would transform society! And families would not be forever condemned to make their own mistakes :)

Do you have access to support groups, and/or training opportunities?

If I had any take away or ah ha moments in my 7 years caring for dad, it was that I didn’t want to be as negative as he was. I often asked myself what was I to learn from this experience. So in that regard I have tried to change a somewhat pessimistic outlook at times. We imitate what we learn from our upbringing at home, and I saw what a complainer and judgmental person he was. So that was something good I could take away from the experience.

I can reflect back on how much I learned about setting boundaries and wading through the medical dealings of dementia. This I have already put to use helping a friend who is dealing with a mom with dementia.

I knew one day it would end, but during it, at times I felt like it couldn’t end soon enough.
You do your best and that is all one can do. It is just plain hard!

I will be honest and say I read 11 answers and then cried and sat at the table with my head in my hands. It was 10am and I still hadn’t gotten my mother out of bed and was feeling like I don’t care if I do or don’t “do what I am supposed to do”. Don’t feel bad that I cried. I am actually happy for any real moments like that. As notgoodenough said — feel what you feel. I can’t do what’s right for me if I don’t take a moment to “be curious and see what is here” (something a meditation teacher said). I went thru menopause in my 40s so I will say that I have not had the intense roller coaster of emotions that I used to have. This situation has definitely awakened some intense emotions. I cried for the epiphany that this is going to be a thankless job. I may get to dislodge some blockages from childhood traumas by confronting this person that is living in my home (btw— she doesn’t have dementia) or I may be lucky enough to let all the suffering go and just magically grow into a more patient person. Hopefully one that is wiser and doesn’t do the same to her children. I want to respond to you all individually because you all said something that touched me and/or helped me see something different. My epiphany is don’t suffer alone in silence. Express it, let go, and move on to the next moment. I cried then got up from the table and for the first time in weeks said something pleasant to my mom. I soaked in the feeling that I love to cook as I was making her an omelette. I breathed a sigh of relief that I don’t have to go to work today. I don’t have “to do” anything. I quit my job a month ago. I could blame my mom for this lack of income but I’m actually so glad I got pushed to the point of seeing how much I hated my job. I’m also being pushed to the point of realizing I don’t want to be a caregiver. I’ve been walking thru a lot of anger which for me has always turned into depression. For now until the pandemic is over she can stay under my roof. I have an aide come 3 to 4 days now — she acts as more of a companion— plays cards all day with my mom and serves her 2 meals. This arrangement works within the budget. I may start spending her savings to get someone for the other 3 days. Maybe an agency person that costs more but they tend to do more personal care, laundry and picking up after the LO. The last agency person didn’t interact with my mom much other than to wake her up when she dosed off for too long so she would sleep the night when I took over. She would also harp on her to do her exercises. My mom is not doing anything to stay mobile. Prefers to sit in her wheelchair all day and have people wait on her. She even says this out loud to the friend she calls.
I think I will change my title from caregiver to landlady, financial advisor and shopper. Focus on the things I’m okay with doing. Push off the things I don’t to more qualified people. It’s all still cheaper than a nursing home. If this drags into a year or more and she continues to do less and becomes more of an invalid a home is the best choice. I won’t miss her.
I started to think what I might say at her funeral. I couldn’t think of anything nice. A sure sign that this is not the right choice for me.
Thanks all for sharing your experiences!!

My AHA moments came with both mother and MIL when I got sick with cancer and neither one of them showed even the slightest concern. In fact, my MIL was VERY disappointed that I didn't die.

That's kind of a big one to get over. So I just went grey rock with my own mother and 'black rock' with MIL. I simply will never see her again.

People don't 'get it' and I have to take some grief from family/friends who don't understand, but in the end, there is exactly ONE PERSON taking care of me, and that's ME. I'm useless if I don't watch out for myself.

I do think we are put in situations to learn from them. I learned I was not a Caregiver. I don't have the patience and I overwhelm easily. So I placed Mom in an AL. What else did I learn, is now I have walked in another person's shoes. I used to think, why did so and so put their parent in a home. They can care for them. Yeh, maybe when they can do for themselves. Not, bathing, toileting, dealing with the paranoia, and the wandering in the middle of the night. Dealing with a desease that has no rhyme or reason. You think you have finally "got it" and then they do something so off the wall. Its like taking care of an infant again, and we know how that was and we were younger, but this one is bigger and stronger and we are now Seniors too. The stress of 24/7 care.

The best thing was placing Mom. My house is boring. I am not an entertainer. My house is a split level with 3 flights of stairs. At the AL Mom could walk all around the building. Sit in the common area with others. Enjoy the entertainment. The NH, was just as good only it took more pressure off of me. I don't regret placing her there.

I posted earlier but I would like to add to my thoughts.

People in our lives know us very well. Listen to them. Observe their body language.

My husband, my children and others lovingly started telling me about changes that they saw in me.

It started off with them saying little things like, “I miss your smile. I miss hearing you laugh.”

Then I heard, “You no longer have a sparkle in your eyes. You’re constantly preoccupied with your mom.”

It hurt the people who love me to witness the life drain out of me.

Some of the most honest comments were from my daughters saying, “Mom, YOU are NOT the same age as GRANDMA! You are withering away just like her.”

They weren’t being cruel, perhaps brutally honest which is really a kind thing to do.

They cared enough to tell me the whole truth.

It’s true, by that point my entire purpose in life was only to serve my mother!

I look back now and wonder how I survived. I was pretty badly broken towards the end of my caregiving day.

I strongly urge you not to let things go as far as they did with me.

It isn’t healthy for me to relive my experiences over and over and I don’t wish to be extremely repetitive and drive everyone on the forum nuts. So, I force myself to stop at a certain point.

I learned a lot from listening to people who were genuinely concerned and had my best interests at heart.

There will also be people around us who will complicate matters.

People who only add misery to your life don’t deserve to be in it. Drop them like a hot potato!

Don’t bother to waste your time on trying to sort it out if you have already given others a fair chance. We can’t control how others feel about a situation.

Continue to reach out. A support system is important.

Give yourself the love that you gave away to others so freely. You deserve it.

You certainly pinpoint well all that is involved.
I am really sorry to tell you that I don't think "whatever doesn't kill us makes us stronger".
I suffered a lot of anxiety in taking on my POA and Trustee of Trust for my bro, as well as negotiating his diagnosis, help with his move and etc. We were both "of an age". I was asked by him and encouraged by others that "I could do this for him" and I so WANTED to as he was the best man in my life ALL of my life. BUT, I had never done anything like that.
My bro is gone now. Did I do well by him and for him? You betcha. Did I learn soooo much? I sure did learn. I learned a whole lot more about IRS, SS, Spectrum Phone Company than I ever wanted to know. But in the end it was a whole journey through forests of anxiety I wish I never had to negotiate. Because he was already suffering the results of a diagnosis of early Lewy's, I could not count on the one certainty of my life, the Hansel for my Gretel. And as I said, it was a lot of anxiety. Sorry, but there isn't any upside to requiring so very much of ourselves. We TELL ourselves there is. There is what we did for the one we love. There is what we learned. And that is "some comfort". But, no. There will be no chorus of praise, no Sainthood, very little epiphany I think, and it will open to you a whole view of your own vulnerability, abilities, and hence a whole world of "fears".
So like all of life, you will be in the place we always are. Measuring the good of it against the bad of it, and limping along. A bit smarter, to be certain, but perhaps also a bit jumpy by knowing for sure how fast your life can be upended.
I wish you the best. I wish I had better news. And we are all different, so who knows. For you this may be "all good". For me? I am just me. I am proud and happy I did it and could do it. I would never do it again. I would see some Fiduciary paid to do it, and concentrate ONLY on loving and comforting my bro.

One thing you do learn is that this is not a typical caregiving experience. It requires 24/7 attention to the LO. I never did say “I get it, I understand this struggle”, because I never did. No epiphany. What you learn about yourself, DW, is that you're not Wonder Woman. You need the patience of Job, and the compassion of Mother Teresa. You need endurance, creativity, and knowledge of the disease. Who has all those qualities? And you need one more attribute. It may be the most important of all. You say you've already “hit the wall”. That's the other attribute; knowing your limits, knowing when to say when, I give up, I can't do this anymore. The stress and hopelessness of being a dementia caregiver can eat you up. What is your plan now? Have you tried home care, or adult day care? If you have and nothing worked, it may be time to look for a care facility for your LO.

My epiphany was the realization that I couldn't do it any more. The constant struggle turned me into a stressed and angry woman who was no longer able to provide the kind of compassionate care I wanted my mother to have, plus it was causing me to doubt the truth of our previous relationship and love that I felt.

For me, no epiphany.

I'm sorry. I wish I could tell you that at some point; either during or after, I had that moment when the lights shone on me and I heard the angels sing "aaahhhh". That never happened for me. Now that's not to say it WON'T happen for you. But even if I had had that moment while I was caregiving, I don't know that it would have mattered to me - not with the range of emotions that I went through. My sister once told me "you gotta feel what you feel until you don't feel it anymore." In an odd way, I found that comment to be more therapeutic than a lot of platitudes I heard.

The emotional roller coaster that you are on, that I was on, that many of us here are on are an unfortunate, albeit normal part of caregiving. Not everything that's normal makes sense. Don't beat yourself up about it. I have come to realize that caregiving, for me, was a marathon, not a sprint, and like a marathon, the goal was to finish it and not worry overmuch about the time it took, if you can understand the analogy. All you can do is the best you can, and try not to obsess on what it is you feel you are doing "wrong". Try to feel good about the little "victories" every day, whether they're "hey, I got her into the shower today" to "I kept my cool when all I really wanted to do was curse and scream". That's really all the advice I can give you; remember, you're not alone in this, there are many of us who are or have been in the same boat, and feel your helplessness.

The only epiphany I've had after caring for my husband for many, many years and now that he's passed, is that despite how hard, long, stressful, and exhausting it was, I would do it ALL over again for the man I loved, because he deserved it.

We are all stronger than we know or realize when going through the daily grind of caregiving, and when it's all said and done, we can all hold our heads up high and take comfort in the knowledge that we made it through, and that we did our very best. Not perfectly, but our best. That's all any of us can do.

So hang in there, and do know that there is light at the end of the tunnel. Allow yourself to be human, and don't beat yourself up when you don't think you've done something right. Give yourself and your mom grace. And please make sure you're taking care of yourself during this journey. That is probably the most important thing I had to learn in my caregiving journey, and it's what got me through some really tough times.

May God give you the strength, and courage to continue on this journey with your mom, and may He also give you wisdom and discernment regarding her care. God bless you.

My epiphany, if you want to call it that, was realizing that the struggles of my parents, all the crap they endured, could easily be me sooner than I wanted to believe. Both of my parents went through tough medical conditions and depression over it. It was an emotional rollercoaster and I often wondered if I was doing the right thing. Now I know that most times I did, and sometimes I didn’t, but it does make sense as I’m only human filled with flaws. But now I know there’s no “next” generation to go through the trials of aging. It’s on me to take care of my body and mind as best I can, to plan for the day I can’t self care, and to accept the harsh reality that what my parents went through wasn’t my fault, but do all I can to avoid the same for myself

Oh my gosh, you are a lot smarter than I was in my caregiver days.

I had my mom for 15 years in my home. Mother and daughter dynamics absolutely change.

Caregiving is a huge responsibility.

There were days that I felt completely numb. I am not kidding. It was either go numb or go bat sh*t crazy.

I was afraid to let myself feel things that deeply.

Not feeling was a protective measure so I could make it through another day.

Oh, I took great care of my mom, but I totally neglected myself. Don’t repeat my mistake.

I did seek help from a therapist which helped me gain a clearer perspective on my situation.

I was incredibly relieved when my caregiving days came to an end.

Don’t second guess yourself. Trust your instincts.

This isn’t about a lack of love. You can show love for your mom by acting as her advocate.

Don’t ignore your inner most feelings. Start considering other options. Check into suitable facilities.

Best wishes to you and your family.

I’m afraid after 4 years no epiphanies. Just trying to make it day to day.