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I moved into my Mom's home after she had a near fatal car accident. I took care of my Mom's EVERYTHING for seven years as she got progressively worse with dementia. It was full time for me between caring for person, the house and other matters. I did this completely alone in a semi-rural location. Not near family or in a long standing community. My mom had moved states just before the accident. I didn't intend for it to go on so long but it just happened somehow... My brother and sister had problems in their lives that they could not help (a child with cancer, an alcoholic husband)



Due to my sister's insistence, my mom moved to an Assisted Living Memory Care about five months ago located near my sister in yet another state. Her point was that I'm not going to be able to care for her alone at home as the dementia was getting worse with incontinence, wandering, UTI's and hallucinations. And the socialization would be good her. We were in a rural location so getting to medical care and people to help is difficult where we were. My sister has her in-law family around, a good job, husband (in recovery) and children. I caved and agreed to it.



I was so busy getting through the days before. Now that I have some time with just caring for the house now. I feel scared that I don't have energy to restart my life! It's like I got off a treadmill and feel so exhausted. I think it's burnout rather than depression. I feel like the only do basic things to get through the day. I feel sad about the progression of the disease that I could not fix. I feel so guilty for moving my Mom to Memory Care.



People ask me "So now what are YOU going to do now?!" As if I'm some racehorse that was just waiting to bust out the gate but I feel like an old tired mare.



I can't go back in time to my old life before I moved to help and care for my Mom and the house. I'm not the same person. My old friends don't really understand and have sort of dropped off or I can't relate to their more petty concerns. I don't have the energy and have lost skills to return to the old work I did. I have such heavy emotions too. We still have my Mom to care for even though she is at the facility. I think I will have to move to near my Mom and sister which will AGAIN be a new place I have never lived. I don't feel bright and like anyone would date or hire me. Setting up and living alone in a little apartment sounds so hard to do. I am 52 single woman. And we still have the house to deal with.



Does anyone have advice on how to restart and rebuild their lives in midlife after full-time caregiving at home for years?

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Dearest Saintsael,
What a beautiful thing you have done. Something that is truly a triumph of love.
Your sister also is to be commended for her cool head and caring insight. She looked at the big picture for not just your Mother but also for you.
Families aren’t always like that.
But now, we’ll, things are different and it’s time to move on.
Recognize that your time with Mother was an escape from the world, and being a caregiver can be so gratifying. It’s a kind of “high”.
You are the one riding in on a white horse to save the day.
Now, it’s just another Tuesday.
Thats a big change.
But you can always be proud of your unselfish gift of care to your Mom.
Get a new hair do.
Paint the walls, throw out old junk and start fresh.
Its time.
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I’m in the same position! I had a business ( a tutoring business) that I had to cut down to “pocket money “ to care for my mom. She was living alone in her condo then we moved her to a truly bad assisted living. Moved her back to condo 2 days later. ( too long of a story to put here… and yes, we did our due diligence!) Found another assisted living 8 minutes from my house. I’m there a LOT. She begged me to live with me. Heart wrenching. I have autoimmune disease and can’t do it. Anyway, then began the clearing out of a 3 bedroom condo. OMG. We now have a contract on condo but found out my mom had somehow put the condo into some legal limbo ( again, too long to go into here).
I spend my days making sure mom is ok. Navigating the HELL that is her insurance, trying to untangle the condo.
PEOPLE DO NOT GET HOW THIS SAPS YOUR SOUL.
Its not complaining ~ it’s reality!
They freely tell me that I need to take care of myself. What am I going to do with my time?
I feel like I walk around with a pasted smile and say things like “ my choice is to take care of my mom. Or, yeah looking forward to the next chapter”
WHAT? How can I start my business against when I’ve got overwhelming responsibility?
to those that are inclined to ask me about siblings…. Please remember that not every family is blessed to have cooperative family. Sometimes siblings are NOT the best people to have around when dealing with financial situations. Or personalities between some sibs and parents are clashing.
I truly feel for you and myself!!
I wish I had the magic answer. My therapist mention to me a woman On TED TALKS. Called Kristin Neff. She talk about self compassion. It helped a little but I’m too wrapped up in the present to apply her principles.
BLESS US ALL!!
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saintseal Sep 2022
Thank you for your reply. I checked out Kristin Neff and it was helpful. Also, someone on here I think recommended Pauline Boss too. I just finished "Loving Someone Who Has Dementia" by her and it was completely so much what I needed. I would recommend to everyone on this site. One of the things she says is that caregivers may have sadness (not depression) and immense stress and confusion (not anxiety) from a situation that cannot be fixed. You may experience grief before death in a limbo state from a cascade of losses. Anyway, thank you for your reply. Be well and all the best.
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Goodness. You need to look after yourself and process all that has gone on and is still happening. Give yourself a break! It sounds like you are burned out which isn't surprising. Please take time to work through your heavy emotions and recover somewhat from all the caregiving before you make any major decisions re moving. Be gentle with yourself. Do some things you couldn't do before even if it is just going out for a coffee or a walk in the park. You can build new friendship, but it won't be instant. Mum is being looked after in a facility and your sister is near so there should be much less for you to do. You have nothing to feel guilty about.

Dealing with the house is a big job in itself. Is it urgent? or can you take some time to adjust? ((((((hugs))))) You will get through this.
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saintseal Sep 2022
Dealing with the house is a whole big separate issue for sure. Thank you for your kinds words of encouragement and your advice. :-)
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You are screwed because you are older and you have not had a job with an employer! You can try something in the health care field because that is your most relevant work experience. Or you can be bold and start your own business. Get out and start meeting people. It’s not what you know but who you know. Learn to enjoy life.
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We got my mother moved into care last year. I am a bit older than you are and have a husband plus kids, so I did not start over. Plus my mother was here, with us.

But I want to say that, once she was in care, even at the four month mark, I was still jumping every time the door she used opened. I was still waking in the night, certain I heard her calling my name. I still had moments of panic, like, if I wanted to accompany my kids to something, what would I do about my mother. I was still hyper-vigilant, glancing out my windows in case she went outside and started to wander away, or putting away dishwasher pods, etc, in case she started eating something that wasn’t edible. I don’t know if dementia made your mother nasty (as it did mine) but I was about a year, before I could relax, sleep through the night, and feel like myself again.

Caregiving takes a huge toll, physically and emotionally. If you have the means to coast longer, please take good care of yourself, until you feel you have the strength to move on.
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saintseal Sep 2022
Yes, I can relate to the hyper-vigilant! I am still unplugging the toaster and coffee pot. And double checking this and that. It sort of made me OCD. Keys are here. Put this away. Etcetera. Yes, there was definitely some really bad horrible nasty times but to be honest, she was a bit that way before dementia too. She was actually getting sort of more sweeter and frail. One thing I didn't say is that we started at one place that was horrible (they were 'forgetting' to do her laundry and showers. And wanted us to get an additional outside aide in to help at a huge additional cost and wanted us to get her with their in-house doctor and and medications) She had been on a waiting list at another place so when that opened moved her. So managing all that drama was horrible on top of everything. So really she has only been at the new place 3 months now. Anyway, thank you for your reply. :-)
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Don’t feel guilty. First work on that as it probably gets you down. You could not fix progression of disease, nobody can.
Self care is important, good nutrition and even 10-30 minutes gentle exercise, like walking.
And time, realize you don’t have to do anything right now, just enjoy freedom, when you ready or willing do plan A and B. A, what would you ideally do in your life? Plan B maybe more realistic? What did you enjoy before caregiving? Can you find any job even few hours, surely skills you had are not lost?
Change is not such a bad thing,
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Wow. I dont have a suggestion for you, I actually share the same dilemma.

Im a 54 yr old single guy caring (doingveverything) full-time for my 84 yr old mom with late-stage Parkinson's and dementia. I get some (16 hrs per month) respite care through the county; another care giver comes m/w/f for 3 hrs day and I get 2 days off a month from family.

The time she will need to go into a facility is close and I feel exactly the same as you do. I guess the only help my story could bring you is to let you know that you are not alone.
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Wow..I wonder also how I will restart my life when my mom is gone. She is 89 I am 71. Even with my mom in an assisted living there is constant care needed. Facilities are not perfect.They are understaffed and can be lonely for older people. My thoughts for when my mom is gone is first a rest… a vacation …then I hope to get back to some light volunteer work as I was doing pre-mom needs. Then working on rebuilding friendships that had been somewhat neglected these past years. Sadly many friends did not understand the stress of caring for a loved parent and friendships became surfacy. No one wants to hear the bad stuff. Friends drop off. It is all consuming..we can not turn it off when you leave the facility after a long visit. I expect rebuilding my life will be tough. The GREAT news is you are young..you will have time for rebuilding a life. Prayer, a good church and counseling has helped me keep my head above water. Good luck…
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Have you tried to reconnect with friends that have been lost or put on the back burner. Now is the time to see how much YOU have changed. Caregiving brings a whole new perspective to things.
Is there anything that you dreamed of doing before?
A class that you wanted to take?
A new career that you wanted to try?
A hobby that you wanted to restart, or begin?
Is there an organization that you feel strongly about that needs or wants Volunteers?
Does the Animal Shelter need dog walkers? A Foster home?
Find you first.
Start slowly and see how it goes.
Is there a trip that you have had in the back of your mind? Spain?...Italy? ..France?.. the Northwest of the USA?.. the Southwest? Alaska?.. Scotland? A Cruise? Start planning
I say all this but do not do anything "drastic or major" right away. This is like any of the Major life events that "they" say you should not make any changes. The top 5:
Death of a loved one.
Divorce
Moving
Major illness or injury
Job loss.
Any of these can lead to health problems, emotional problems. Talking to a Therapist is not out of the question.
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This has taken over who you really are. Take one step at a time. Maybe look for a PART TIME job related to what you did before. If you ever had a hobby (gardening, art work, dog or cat person, cooking or baking, a love of history…you could join a historical society or a historical commission. Surely you were good at something. Whatever your interests used to be, you can reignite the passions you once had. Then, get on line like a neighborhood site to find people who love the same hobby. Join up with several people who formed a dog walking club etc. Just don’t make yourself sound vulnerable, helpless female, living alone, etc. You need to meet nice people; not scammers. Good luck with your new start up in life.
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SS, you can restart, I did it at 61. I was able to return to my profession after four years of 24/7 care for my mom and her hubby. How?

I looked in the state of my residence, where I was born and raised. I was not able to even get an interview. I applied to adjoining states and did get an interview and was hired. I had to be willing to think outside the box. I moved from a major metro area to a small town of 25,000 or so.

I spent a year there, I was not happy, and then was able to move back to my home state and was in my next position for five years. Now I am onto the next, just this year. I am hoping this will be the job i retire from. Each move got me closer to what I had lost before the caregiving.

There are so many jobs out there. You need to find the courage to be willing to go to a market that is not as competitive.

I did it, so can you. And you are ten years younger than I was.I

Contact your Work Force Center, they can provide all sorts of resources to help you. It is NOT a hopeless situation.
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saintseal: Perhaps you can take 'first things first' and get yourself in for a visit with your primary care physician. If warranted, it may be a good idea to speak with a counselor. Take small steps to get back to the YOU that you knew.
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Thank you for your selfless care and I am glad you have time now to rediscover yourself. Just like retirement , it does take about a year to find a new rhythm of life but it is freedom to choose your own interests. Try some music or art . Go to museums or libraries , free concerts, evening classes .
give yourself time. Also you have a valuable knowledge of how to care which may be a gift to share by being a resource to verbally share your knowledge with other caretakers.
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I have started over and it is hard don’t beat yourself up! I am over the 4 year mark taking care of my mother alone in rural maine at age 63. I also took care of my dad after a stroke that was terrible. My advise get to a doctor get on some good medication that will help your moods and give you energy too. Get outside every day, and exercise when you can. Look up old friends and join some kind of recreation group if you can’t find people to do things. It is ok to do things alone! Treat yourself to a movie, new clothes kitchen gadget etc. I try to have something to look forward to even if it is small like a new walking trail. Get out of the house whatever go window shopping, walk your town, have coffee see people you can do it!! Not every day will be great but claw your way to a new life. Good luck
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I’m 11 years older than you & I’ve been caregiver to my 95 year old mother with dementia for 5 1/2 years plus ..before this she walked but needed walker. I’ve had private pay aides help at home. I was Substitute teaching for about 3 days a week & now working part time in office. The aide stayed home with mom when I worked. A month ago the aide tested positive for Covid, & had to isolate for 5 days. Then a week later I got it & had to stay away from my mother! The day she told me that…instead of scrambling around for a backup/substitute caregiver, I called ambulance & got my mother to hospital & after that, short term rehab. She still in rehab facility. .I still have to come every day after work to feed her & check on her. I’m thinking about having same woman aide from I had at home come to help her finish her breakfast & lunch. . I feel more stressed coming here & dealing with a million people than just caring for mom at home with help from aide. There’s the Nurse, Dr. Dietitian, CNA , etc etc etc. Gives me a migraine. I signed retainer & gave check as well as 5 years of paperwork to Elder law Atty. I began working on paperwork last Summer. The attorney said, “You did a lot of work!” I made copies every check I ever made to caregivers. I’m now thinking I should have just left her home. & wait for aide to return…
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ChirsM Sep 2022
You're in a very difficult situation and there's no easy answer unless it would work for your Mom to come back to her home and you get the aide to return to help you. It is a very difficult job.
My husband died 3 months ago and I at an absolute loss how to get a life for myself back. I feel as though I have no life at age 82! This is the weight of doing all the work and thinking for two people all these years but I have some good days and my neighbors are friendly and generous with me and it makes me feel I can get a life going sooner or later.
Do whatever you feel more comfortable doing. Take care of yourself too!
I ja
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Please seek out a Psychiatrist who can meet with you to do a restart on your life and he/she can write prescriptions that may help you through. your transition back into society and you need to explore options. Start keeping a diary so that you can discuss past, present and future. If you want to move to a more exciting location, discuss selling the house with whomever else is involved and start imagining yourself living where you want. You can meet with a jobs counselor and explore jobs that appeal to you. If you're financially set, please consider volunteer work: whether you work with pets, children, or your local food bank, it will bring you joy. I hope you won't get yourself stuck in care giving you've done too much already; your mother was very fortunate to have such a loving and caring child.

There are great wellness resorts for you to consider too............are you ready to explore them? Google, "Wellness Resorts." Happy Trails!
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First realize you are an absolute HERO. Your cape is just tattered and in need of mending. Start by enjoying small tasks, small things. Second, please realize you are YOUNG! I would love to be 52 again, but I am a YOUNG 67! Deep breath, smile, forward. Thanks for sharing your story.
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bundleofjoy Sep 2022
wonderful message! and i agree! OP, go forward!

OP you wrote:
“My old friends don't really understand and have sort of dropped off or I can't relate to their more petty concerns.”

i understand you.
that’s part of the reason many of us are in this forum: here we feel understood. we’re going through the same things.

it’s very true: if you haven’t cared for your elderly parent, you really don’t know what it’s like.


what advice would i give you?

you helped your Mom from 45-52.
7 years. as a woman, very important years.
years to get married, start a family, build your career.

——
first of all, you must be very stressed still from all the caring (7 years non-stop).

in addition, it continues! she’s in a facility, and you want to continue helping, maybe even move again for her!

——

secondly, please don’t sacrifice your life. you’ve helped ENORMOUSLY. you gave her extremely important years of your life (age 45-52).

please OP,
don’t sacrifice your life.

you’re very kind.

be very kind to you. you cannot, should not, i think, live ONLY for your parent/s.

we can help X amount of time. put a limit somewhere, beyond which you MUST focus on you.

before it was 99% your mother, 1% your needs. tip it the other way.

90% you, 10% your mother’s needs? 99%? whatever % you want. but now it must be balanced in your favor.

i’m telling myself the same thing. i love my parents, but helping them is really now destroying me. i must prioritize myself now. i have tried my absolute best. it’s now time to try my absolute best for myself.

you’re 52 OP. you have dreams/goals. go for it. your mother’s happiness should be = you thriving, blossoming, happy.

before it was:
her happiness/health made you happy.

now:
your maximum happiness/health should make her happy.

hug!!

bundle of joy :)
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Don’t look at the “whole” take it day by day. Tomorrow start deep breathing then take a short walk. Next day the same and make one phone call couple of days later go shopping and make a point of talking to someone even if it just to ask what aisle is the sugar. Etc. By the way if you do start job hunting be sure to include the years you were taking care of your mom on your resume you might be surprised. You are a good daughter and a good person. Be proud of what you did for your mom. Good luck.
PS: don’t be in a rush to move.
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riamay7 Sep 2022
This "baby steps" approach is very good advice, because even miniscule steps feel enormous when you're that burnt out. To me, it sounds like there's some ptsd going on mixed with guilt and fear.
saintseal you may never realize all the good you did, but you sacrificed a lot and it is more than enough. Try to begin trusting others to do the care. Try to meditate and connect with the real you again. Like a seed, it will slowly unfurl, and blossom. Start each day with a grateful thought, take tiny steps, be kind to your wonderful self- you got this!
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i feel your pain. I built a house with my mom to care for her. I have three siblings but none would help. I quit my job in June to be home full time with my mom only for her dementia to take her down quickly. She has been in a memory care home for a week. I’m 51 with a new husband and am trying to go back to work. The job interviews are few and far between even though I worked in education. It is scary to start over but we have to take things one day at a time and not let fear take over.
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ChirsM Sep 2022
Maybe you want to try doing different kind of work. It may be easier to get a job that's not as competitive as teaching. It's also good to rethink what you'd like to do with your life. I'm doing the same. My husband died three months ago and I often feel like I have no place to go even though I live in an apartment, now I have to share to afford the rent but I try to think of it as an opportunity to do something different and share what I have with others. I also think about volunteering though I have limited energy now, but maybe later. Meeting new people and being independent are major concerns of mine. Good luck!
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Did you enjoy ur old job? If so, is it the type that you can go back to school to refresh your skills, than do it. If money is no object, than you could take any job you think you'd like. I always thought working in an antique shop would be neat.

After staying home pretty much in the the last 2 yrs, I found out I have to push myself to do anything. I agree, one day at a time, one step at a time. But you may have to push yourself to do it. This is the day I am going to...and do it.

You said your out in a rural area, maybe it would be better to move closer to Sis and Mom if there is nothing where you live. You said u and friends have nothing in common so new town new friends. But...you are going to have to work for that "new" life. Get a job, you will meet people. Even if its just eating lunch or going out for a drink with fellow workers its better than being home alone. I got to a point in my life that I did not go looking for friends as such. There are just people you just click with. Libraries seem to have so much more to offer than before because of Kindle. Ours, before COVID, had bus excursions. Great day trips and the people on these excursions were great. Volunteer. Church is a great way to meet people and volunteer. Maybe an exercise class. Not sure if its still done her at our High School, but night school.

I wish you luck. And update us on how things are going.
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Your story is so similar it sounds like mine. I left a successful business I started to care for my wife. I have been thinking some low paid job just to pass the time or starting a new business. You are right things seem a little scattered after such an intense care giving job. I’m 63 now and job opportunities are not plentiful at my age. You do have many skills I have even thought the medical profession there are many jobs there.
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saintseal Sep 2022
Yes, scattered is how I feel. It was much more intense I think than I understood. Thank you for the reply.
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Go walking, join a gym u can do it it’s ok. Get to gettin’ . I believe in u!
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Girl u better get to getting and living. I would move near bc u may one day need help. Not only that u can go visit mom, meet to ppl. Start fresh go get ur new make over buy some clothes. Sign up with a job agency also sign up with AARP to get some discounts on travel, food and they have places to visit and things to do in this site just type in ur zip code. Ur still young stop thinking negative God Will Bless U! Go for it get online check things happening in ur new place also maybe u and ur sister and mom will be closer. Let go and let God!
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Bren11 Sep 2022
I love your spirit! You just made me sit up straight, I need to take your advice too! Thank you
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You're feelings are very valid! I took care of my "boyfriend's" mom by myself for only two years. Moved from another state. Gave up my old life, job, etc... I can tell you that it will take time. I'm 55 myself. She passed in June this year. I'm going to tell you to take care of yourself, for real! I use to be go,go,go and constantly doing before going there and while there. Now? I got my old job back, kept my house while in another state. I don't/can't work how I used to. It's now September and I'm still struggling to have energy to work and try to get through the everyday things. Not depression here as well. It beats you down. I still don't get enough sleep. Everything is exhausting. It will take time to get back to a somewhat normal routine work/life balance. I struggle but am committed to staying focused. You need to ask yourself do you really need to move near your mom. Someone will hire you. Someone will want to date you. Your life is far from over. I stay positive, hopefully you will as well. It makes a huge difference. Take baby steps. Is your mom's house being sold? If not, is it viable for you to live there? This old mare still has the spark, it's just taking a bit to get where I want to be. You'll get there! Stay positive and stay focused! Please above all, take care of you!!!
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Of course, you are still in a bit of a state of shock at losing your accustomed role in your mother's care. Do not rush yourself, but as you continue to see to necessary matters concerning your mother's house, think about things you would like to be doing. Do you tead? Garden? Cook? Sew? Love animals? Does your "rural location" include a town? a church? a store? a library? Where do you shop or go for supplies? There are usually bulletin boards with community announcements as well as other people in the store or church or library you can approach. Is there a committee or a service project you could volunteer to help with? It would be a way to meet people and begin to become part of your community. Steadiness and time will help you find your place.
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I'm now 78 but when I was 62 I took care of my Mom with a stroke induced dementia for about 3 years while working full time. Luckily I never lost contact with my old friends (would check in via email just to say Hi even while caring for her) but about 2 months after her passing, I grabbed my camera and a book and checked into a hotel in the Shenandoah valley for two night. Got some great photos (I had no idea what I was doing... just got lucky) and got very immersed in the book that I read at night. It was a rebirth. The old mare may not have burst out of the starting gate but out I ambled. The sun was shining, people were laughing, music was playing and I decided to join the world again. Got a dog and took her to training classes met some people there and made a few real friends. Took a local dance class. Met some folks there and had a ball. Went to CA to visit some friends I'd made years ago. They took me to a ballet performance and afterwards we went to the ballet after performance celebration. There was low level latin background music on and while I was nibbling on my shrimp appetizer I did a very slight samba movement and heard a voice say " I remember you. And you did that move really well". It was a guy who'd been watching my dance class a year ago! He joined our party insisted we all have a late dinner and he and I have been dancing ever since!

So the world is waiting for you to join it. Doesn't matter how you get out of the starting gate as long as you get out. You don't have to have a dog to go to the dog park. Admire people's dogs and you will meet all sorts of people who are potential friends and sidekicks. Indulge in a hobby or something you always wanted to explore ........... painting, writing, photography; learn a musical skill ... piano, flute, guitar; learn a new language.... Spanish is pretty easy to learn and practice and could take you places in the future.
The world is waiting for your presence. Get out there and make yourself known!
Good luck and keep us updated
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Hugs. My parents agreed to move to a care facility a little over a year ago. I had given up a job oversees to come back and live with them…but I ended up getting an apt nearby. They decided in the move AFTER I moved out…and we decided to sell the house. It’s been 3 years plus since I’ve been stateside. I feel exactly as you described. I turn 65 next month. I always thought I’d work until 70 or as long as I could. I loved my career. But now Im just too tired to even think about returning to the workforce. I have no advice…only writing to say you are not alone. I’ll be following to see what others may suggest.
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The first thing you should do for yourself is get in touch with a therapist because they can help you work through this. Even if you live rural, you can do therapy on line and with televisits.
Then think about where you WANT to be. Not where you think you will have to end up.
Is staying in your mom's house a possibility if you bought it? Could you live with your sister for a while so that you wouldn't be alone?
Would you consider working as a private-pay caregiver because you have so much experience in this line of work because of your mother. They pay can be very good if you work private.
What were your old skills and the job you did before caregiving? They may still be useful.
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I hope you take the advice that is given here. It is all really good advice. At 52, you are young enough to have it all. I agree with the person who said your sister saved you. You are so lucky to have a supportive family. Years ago, a therapist told me to act on everything I think I might like to do. This was in response to me bemoaning the fact that I didn’t have a life and too tired of trying. I’m single. She said if I thought I wanted to take up fencing, then do it, if I wanted a dog, get one. I didn’t take her advice until now, easily 20 years later! Don’t let yourself get stuck! Don’t go down the caregiving rabbit hole. It’s very hard to climb out. Thank your sister and become your mom’s daughter!
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WOW!!! you are a great daughter! My suggestion is to get a hobby. You can do this online. Or find a shop, in the city where you live. Crochet, knitting, painting or book, movie reviews club. Some kind of fun thing you can do, yet not be an expert at. Remember hobbies are for learning not for being an expert at. I hear a lot of people say "its not perfect" well, we aren't and when you are learning, your project won't be. That said, this class/club will introduce you to others and you will make friends. You will learn a new skill(s). Blessings to you and yours! ;)
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