How to rediscover yourself and keep going?

How do you keep going?  You make plans, to be implemented in stages over time, and you create goals integrated into those plans.   

Formulate them in such a way that you have lists of activities and goals, and each day engage in an activity for the goals, however small.   That gives you daily progress, and something to look forward to.

One way to approach this is to ask yourself what your goals would be outside of caregiving, for you and your children.    Then identify the steps and activities and figure out ways to contribute to them along the caregiving journey.

Sunnydayze, you're quite welcome.    If it's any consolation, you're not alone in this process.    It's helped me through some tough times.   What I'm also starting now is using decorated stationery to print out my goals, steps, accomplishments, etc.    Just looking at lovely stationery (apparently becoming obsolete as I think less  and less people are writing letters) makes me feel better.

I also listen a lot to the classical music channels through cable, jot down the ones I want to learn, and search through my piles of music to find the scores, then start practicing.   I won't even address how badly my playing is, not having practiced for years!)

(Chocolate helps too, but it's not without unpleasant recourse!)

I am 79 this year. I have made it clear to my children that they are NOT to consider caring for my health in any expected decline. My life work has been lucky enough, given my natural frugality, to provide enough to pay for my care in facilities when it is needed. That has addressed for me, my children. I even have the agreement/cooperation of one of my children to see me through my own voluntary withdrawal from food and drink when I want to do it/if I want to do it.
It has always been clear to me that I am not someone without limitations. One of those limitations I knew well and surely. I was a nurse. I knew what it took and did it three days a week, 12 hour shifts, for a very good salary, and was dedicated and loved my career. But it was always clear to me what it took, and that I could not do it 24/7 for family. Ever. So I did not take on the care for others.
Ages 45 to 75 were the most free of my life. It was a time when my children were grown. When I was well enough to travel. We built a small second "cabin" on land that was in the middle of nature. We went to Europe. I took classes and formed hobbies I loved. After retirement at 62 I still had 15 years when I could hike and chop wood.
I would say that you are correct. When you are a caregiver it is consuming and consumes your life entirely. It was accepted in other cultures and in our own earlier generations that this is the way it is. But not it is more or less a choice.
I now don't wish to travel. Am content with the garden and with the books and with hobbies, activities I enjoy.
It might be of interest to you that my grandson is this year graduating college. He will have a career. And now questions EVERYTHING as in "Is this it? You are born, go to school, go to work, have a family, die? Is this all there is".
So your thoughts aren't unusual even in the young.
I would say that you are now coming to an age where you have decisions to make about what you WANT to do with your remaining years, what you CAN do.
I have twice in my life been to a counselor. Once a very heartbreaking divorce. Once a cancer (35 years ago) diagnosis that made life itself an uncertainty. It truly helped. It helped comb out issues, choices. I recommend it.
It is difficult to stay in the present day. We are planning creatures. Some of us are more anxious than others (count me IN on that).
I so agree this is a great Forum. And you are a trusted participant here often.
I sure do wish you good luck. Don't try to do the "I should" or "you should" thing. Allow yourself to think whatever you want on any given day. I learned THAT from cancer, to ignore those who said "You have to think positive". Guess what! You can think as negative as you want and still be alive 35 years later. Hee hee.

It is the first day of Spring. Embrace the new beginning, get out and do something for you!. Mind over matter. We all worry about the burdens we have heaped upon as as nurturers ... Allow a "worry" time and then get on with the rest of your day and life. It will be hard at first. I'm trying to avoid being like my grandparents and now my folks... I'm always purging stuff. I'm consolidating accounts and purging old files.... I own a small first floor living cottage to downsize into. It is currently rented.

Spring has me planning for my flowers. My husband can sit on the deck nearby and watch me. As long as he sees me he will not try to get up by himself, which he can’t. Planning in my head for planting in May

I can relate to your situation. It is one of the most misunderstood activities in life to be a caregiver. Kudos to you. The one thing I did early in my 12 year long caregiving for my massively handicapped wife, was to pray to be given a servant’s heart. God provided that in spades. Each day I awoke and felt as though there was a wind puffing up my sails, so to speak, and I was eager to get to the nursing home. I went to assist my wife with breakfast, have a prayer time with her and come back to assist her
with lunch, watch Judge Judy and the soap operas. Then she would nap. For supper time, I paid ladies to come from four to six pm and assist her with dinner and have one way girl talk. (She could not speak despite being very alert). She was also paralyzed on one side.
(the staff could not provide the level of care that I and the paid helpers at supper time did.)

I often felt stressed but made a decision early in her years of confinement to always exhibit a positive view of everything. It worked well for us.
I realize I have not addressed the details of your post. I hope what I have said gives you a glimpse of how handled our situation.
my wife died in 2017, after 61 years of marriage.
Now my health is very precarious. I doctor it as I can and put on a happy face.

grace + peace,

old Bob

I am 58 and in the same exact spot in life: all I have done is caregiving and I am fully depleted. I am an RN and they started promoting Self Care which is awesome but I am a slow learner of new habits at this point. I recently read a great book that may possibly help focus on the hear and now: Atomic Habits by James Clear

Start with this fact - you are a survivor, an overcomer. You have learned valuable lessons with each difficult situation. Take time to evaluate each situation you have faced over the past couple of years. What positives have you gained from each situation? What lessons have you learned that you will implement to make life easier for your children when they care for you? Consider putting together a "Care of Sunnydayze" notebook with sections on health, finances, likes/dislikes, memories and insights that are helpful for them, maybe a short photo album of important people and events in your life (with wonderful captions). After you have put together this wonderful compendium of help, consider that others may benefit from your experiences and insights. Consider writing a book or creating a fill-in-the-blank journal that others can use based on your experiences and needs.

By the way, I am 58 and looking forward to re-entering the world of work. I don't feel like I am looking at "the end" of my life but a new chapter full of wonderful adventures.

I have been a busy person for so many years--wife, mom, sister, daughter, caregiver, grandma (my favorite job EVER) friend and neighbor.

And a cancer survivor. Why did I think that the big "C" somehow wouldn't be a factor in my life? But I really never did.

I went from having some fatigue and a cluster of swollen lymph nodes one day into full fledged emergency chemo after a LOT of very painful tests....it was all a blur. Dh couldn't handle the stress, so he traveled as much as he possibly could and asked me to please cover my bald head, it was 'bothering' him. I felt so very, very alone. And so angry at him, as I have nursed him through 5 life threatening things, not the least of which was a liver transplant!! He was not 'there' for me and I wondered if I even wanted to stay with him.

Turning my heart to my faith and trusting God, He sent people into my life who checked on me, brought dinners and sent cards and flowers. Just as I was down in the dumps so bad I thought I would give up, someone would step in and raise me up.

I cleared the cancer and now am in remission. I opted to only do 4 of 12 FU chemos (with the drs approval) and have been very slowly recovering.

I'm working on forgiving my DH for what he could not be---and planning the last portion of my life. I will not live to 90, so I hope to get what I can out of the next 20 years.

My primary focus is on service. There are always so many people who need help. I find when I am giving, I am not so enmeshed in my own 'anxiety'. Everyday I try to include lifting up somebody else.

So many things I thought I'd have forever to do are not going to happen, and I'm at peace with that.

I turn 65 in a few weeks and it's so weird. I never thought I'd get that old :)

I have 5 amazing kids, 5 amazing in laws and 14 beautiful grands I hope to see grow up.

Some days are bad, face it, and accept it. I don't cry anymore, but I can sure get bluesy blue. It's not forever and it always passes.

As soon as COVID is manageable, we will do a little traveling and begin to look for our retirement home.

I think my faith has shored me up so much. And not listening to the news very much--seriously--it doesn't help and makes me angry and sad.

Each one of us is an important part of the puzzle of the world. Knowing that each day of life is a gift helps.

Accepting the good days and being grateful for them and trying to let the bad ones slip away without leaving a footprint on our hearts--takes some doing, but remembering that we are blessed so much, even when we're struggling.

I SO respect and admire Old Bob and the sweet comments he makes about his dear wife. This forum has also been a godsend.

Finding your niche, once again in life, is a challenge.

I understand exactly how you feel. When my husband and I determined it was no longer safe to leave his 89 (at the time) year old mother alone and no other family members stepped up, I knew "my" life was over. Being a caregiver full time is a full time job of dedicating your life to someone else's well being...no breaks, no vacations, no personal social life and major increases in expenses. I had to quit work that I loved and made very good money doing. I would be lying if I said I love it, but it needs to be done. I hope that when I become a demented danger to myself that someone will step up for me.

You are and have been going through horribly tough and what you are feeling is completely normal. First of all, if there is some way you can get a caretaker to tend to the situation so you can sit back completely to get a break and take care of yourself. If that is not possible, you may need to face the fact that you are being terribly harmed by just too much on your plate and consider placement in a facility. Finally, perhaps there is a good counselor or someone you can talk to who can advise you how to cope and get through these times. I feel that might help - you just have to take step one and get away and then find the right person to confide in. You cannot continue like this and right now YOU are the most important one to look after.

I think of it as having multiple "hats." I have my caregiver hat, but I also have my babysitting hat (granddaughters 4 days a week). I have my gardening hat and my volunteering hat (at my church). Being able to switch roles helps me to stay balanced.
For the future, consider my 75-yr-old brother-in-law who spent years caring for his wife until she died of dementia. He grieved, then began to reconnect with old friends. He remarried last year and they are happily planning overseas trips once the Covid-19 risk is less. I know your situation is different, but I think you might plan on re-inventing your relationship with your children as they enter adulthood. It can be very rewarding to cheer your grown children on as they enter into their chosen careers and build their families. With any luck you will have many years to pursue rewarding relationships and interests.

So I think I read that you are a teacher? In my life I've always found that whenever I feel down it lifts me up to help others. I know how to help my students, seems in my blood to know, and also they are striving to do similar things I've done all my life. It is much more difficult to learn how to help my family, what is helping, and what is enabling. With my mom, though, I did learn over the years what had to be done, what really helps her, and to do those things first. All the paper work and practical stuff sometimes has to take a back seat to the emotional help. Same for myself. Is going into my studio for the day the best thing for me or cleaning the house. House can usually wait. I'll suffer if I don't do my soul work. When we have so very much on our shoulders as caregivers, we absolutely have to let some stuff go and do what really matters.

I relate to so much you have said! I am at what I hope to be the last stages of recovery from multiple fractures that coincided with a time of caregiving for my parents. My father passed away a year ago, and my mother is now in an excellent memory care facility.

I have to admit to thinking about others caring for me at the end of my life, and how the lessons of being a caregiver can make that easier. BUT THAT IS SEVERAL DECADES AWAY FOR BOTH OF US.

The trick is not to try to go back to your previous life. I no longer have the energy for full-time work and you might not either. It's time to reinvent yourself! Ideally, do so as gradually as possible. You have dealt with severe long-term stress, and recovery will take time. Meanwhile, slowly start adding in new things. Part-time tutoring jobs come to mind, as does volunteering for your favorite cause. If you have a hobby you always wanted to try, now is the time! Recent cultural changes may be your ally. More online tutoring and volunteering options, and online how-tos for everything you can imagine, Enjoy the exploration!

Dump the pills, and alcohol, and any adopted depressionisms, and PTSD-almost like a religion-- and the rescue dog ideas--( DOGS are great but not when also turned into a pseudo-religion) eat only vegetables, raw, steamed with brown rice cooked with an extra cup of water-- DETOX ! Get cleaned out big time !
Walk in a nice quiet place alone or better still with a friend-- and pray and believe--- that God gives you peace-- adopting an idea of anxiety oh so prevalent is just playing into the enemy's clutches... read Philippians 4:4-9, 12,13-- Be anxious for NOTHING ! or lose the peace that no one who knows you can understand-- all because it is a national past time to be so anxious and not to have any peace-- because you cannot be your own doctor-- yeah-- tell your doc to let you and God handle it---
Listen to praise and Worship music on YOUTUBE-- all of it-- let it permeate your home day and night until it gets down in your soul...
Also find a full Gospel church and get in the prayer group and do not whine-- but tell them you are intent on getting your peace back in spite of everything-- also ask them for grief-counseling-- and--
YOU WILL get it all back-- the confidence you had all your youth.. yes-- YOU WILL ! So have faith, and believe that the Good Lord can and will work a miracle in you and you do not need drugs or secular lala-land goofballs or self-help books-- lastly-- LAUGH-- as much as you can at all the stuff- and also WITH your friends-- and you will recover. Say AMEN. La. Ca suffit. Bon Voyage-- OH that's a nother thing-- travel. See a nice place close by and then further away-- go to the North Woods on the Upper Peninsula of Michigan-- rent a cabin.. on a lake. You will love it-- Good luck. God bless. I had to watch Dad die and then Mom die from dementia for 20 years.. I survived. You will too.

One thing I've learned after several bouts with cancer, the life changing loss of my wife to AD, and many disappointments over the years, is that life goes on.

You've experienced the trauma of your dad's death, the anxiety of all that's going on in your family, and fear of the future. All of these certainly have an impact on your life, but they don't have to define your life. Many years ago Peggy Lee had a song called “Is that all there is?”, minimizing the various positive experiences in life. Individually each problem may not seem like much, but they can accumulate to eventually become depressing. You're already there, along with PTSD. Time to change course. Life should be more than the sum of negative emotions and experiences, don't you think? Besides the meds are you seeing a counselor regularly?

Lack of control, uncertainty, unrealistic expectations, lack of self respect, all contribute to the anxiety and worry we all experience at one time or another... you are not alone. So acknowledge each feeling. Then try journaling each emotion, what causes each, and how you can overcome each. If you're in counseling, your counselor can help. And gratitude is a great equalizer. Gratitude for your parents, your childhood, your husband and children, and their ability to attend college. I like the previous suggestions of setting goals, the thought of spring and a new beginning, focusing on the present, and many other great posts. Your only 55, life still has much to offer you.

These are your best years, go for it! I wish you luck.

I can relate. 2 years ago, my mother almost died alone on the floor in her own house after a fall on a throw rug. We knew she had some dementia already, but the head injury made her much worse. This was the beginning of a saga familiar to all on this forum: hospital, rehab, unexpected other major health issues, finally secured asstd living with memory care. After 3 months (including visiting 4-6 hours per day at the memory care, every day for 6 weeks), I returned home to the west coast. I'm responsible for all financial, medical, etc etc. The stress has taken a toll--after two years of guilt and being forced to make life-and-death decisions, I'm barely able to decide which socks to wear. And like you, I think about my own future care needs every day. It's so overwhelming, I'm unable to come to any decisions or take any practical steps at all. You can't really expect your own offspring to think that far ahead until they are at least late 30's. I've never taken psychiatric meds, but every now and then it sounds appealing--until I read that you are still struggling and overwhelmed in spite of them! There's no magic pill. I think you have to deeply, deeply value, cherish, and protect YOURSELF and make decisions from that place--a constant struggle. Of course you must make decisions in consideration of your own children's future--you've been doing that since they were born. Apply that mindset to YOURSELF now--because your parents can't do that for you anymore.

When I found my birth family in 2000, I was thrust into post traumatic stress disorder and suffered something fierce. That led me to question everything, and to fear death and to dwell on it continuously. It took me about 4 months to get on medication, and during that horrible 4 month period, I became interested in acquiring more knowledge about the afterlife, and if there was such a thing. This is what I call the 'blessing that happens in the face of a curse.' The good stuff that rise up from the ashes of the bad.

So I started reading about the afterlife voraciously at that time, 20 years ago. Everything I could get my hands on. Book after book that was published on the subject, by people who have had near death experiences and wrote about it. One and all, similar experiences to share and to let the readers know about. That yes, there IS more to life than what we have here on Earth. That our short journey here is only a very tiny portion of an eternal life that we souls are living.

I learned all that in Catholic school, about 'eternal life', but it was all shrouded in mystery and we were forbidden to ask questions. Or to question ANY of the 'why's' of life or death. To have blind faith only. And for me, that's not enough.

Which is what led me to seek further knowledge on what's now a HUGELY vast subject. With tens of thousands of people (more likely hundreds of thousands or millions) who have had near death experiences to share, so we now KNOW there is more to life than 'just this.'

Learning such a thing and believing it takes the fear out of death. That puts a whole new perspective on LIFE. When a loved one dies nowadays, it doesn't upset me. I know they're going to the next phase of their eternal journey and in a way, that knowledge brings me comfort. I see and find signs from my departed father all the time, so that just drives home what I already know: that he's safe and sound living a full life on the other side.

So, for me, taking the fear and the mystery out of death relieved a huge burden from my mind. If you'd like to read a good book on the subject, I suggest one by Dr. Eben Alexander (a neurosurgeon) who had a NDE and wrote about it, called Proof of Heaven.

That's my 'advice, insight & feedback' for you, from my own personal struggle with PTSD and the like. Alva and some others have given you some other great feedback as well.

Wishing you the best of luck coming to terms with life on life's terms and finding your peace with it all. It's not easy, any of this, that's for sure.

HI, your story sounds akot like mine. I have been contemplating life and trying to wrap my head around losing three close friends to cancer in the last year while my 90 year old mom who is in very frail health just hangs on. Therapy has helped me deal with mortality and how we have no control over it. Also helped me deal with becoming an empty nester and watching my kids start their adult adventures. I have also started reading which I hadn't done in a very long time. Wishing you peace and contentment...it is sometimes hard to find

lealonnie, I read that book. It was inspiring and a good read. Great post.

I truly hope that you will find peace soon.

Life can become miserable at times.

I wouldn’t hesitate to speak to a professional therapist to help sort through this challenging time in your life.

I have already told my 2 daughters that we (and their husbands) are going to sit down with a notary public and sign papers to put me in a nursing home as soon as possible. I’m very serious about this! I love them too much to put them through what I’m going through now. My life is a lot like yours. My step-father has been in the hospital since January and won’t live much longer and my Mom is so emotionally and physically bad off, that it’s driving me insane. I love my Mom, but she called me 56 times one day! The average for her is 39 times a day. She is always negative and I’m at a loss as to what to do for her. She is 88 and my real Dad is 91 and he’s in perfect health! He still goes out on his property every single day and works! Such opposites! I’m praying I have more of his genes. Good luck to you.

Unfortunately, I don't have much time now to respond.
The answer is:
BE AWARE OF BEING PRESENT.
This is a discipline to bring yourself 'back' to the present whenever you can.
Feel through, feeling through will interrupt the 'same old same old' response.
Explore feelings as if you are on an adventure - be curious vs. swept into the fear and anxiety. I studied / work with FOCUSING technique. It is learning to talk to / follow a feeling. Feelings want to speak to you. We need to train our self to listen to what they have to say. It is an amazing model / process. Google it (Focusing by Eugene Genlin) although I love how the woman in Berkeley works (I forget her name). I bought her books years ago, had a professional focusing session myself, and did focusing on others. It is a guided experience, whether you work with another or yourself. You consider yourself sitting NEXT to a lake and watch the lake, the ripples, the colors, the temperature. You do not jump into the lake. You sit with it / next to it. This is what you do with your feelings. Sit with them, be with them. gena

Imho, do not lose sense of self.

Read your bible daily 1 Peter 5;7 Throw all your anxiety on him because he cares for you...The Book of psalms.

Also continue with your mental health counselor, be willing to do some research for good values you can teach yourself and children. Seek out support for your concerns. If they don't work for you continue to search for the right support and do not give up, you are precious to God.