How are things after caregiving?

I am about to find out what life will be like after 4 years of taking care of my baby sister, who just turned 59 and is back in our home after being discharged from the hospital with hospice care. We moved her into our home from out of state when she started having performance issues at work; later that year, she was diagnosed with very early onset AD.

I am very sad that the end is in sight, even though I know it will "free" me to do lots of other things with my time. Despite the handful of times when I lost my temper, I truly believe that my sister was a gift to me and my husband. She taught him empathy and compassion, and he (finally) showed how much he loved me by integrating her into our daily lives for 4 years.

I suspect that I will be emotionally drained for quite awhile and then will begin to pick up, focusing first on the friendships that have languished during my caregiving stint. I retired as a Professor of Economics when my sister come to live with us; it would be great to go back and teach a class or two. The one thing that I will intentionally relinquish is giving advice to everyone - especially my children - on the choices they face. My sister's disease has taught me that we have so little control over the most important things in our lives. I will never understand why my sister had to go through what she did, but I do know that she has brought a whole lot of meaning into our lives.

-transitions are hard. Especially when you were a 24/7 caregiver.
It is a new way of learning to live again. It is memories, sometimes bad, sometimes resentful of the time you devoted without appreciation.

-allow your self to take the time. Learn a hobby, enjoy going places you couldnt before. It is your new chapter.

- it is ok to go to a therapist or support group. get out the feelings. find out how to move forward and not live in the pain of the past. water under the bridge. Dont carry it anymore. Thank God it is over and that this is your time to develop things you like to do and see and hear and eat and make...

I think that it starts with what type of relationship you had to begin with. Many who had close relationships prior to caregiving, find that when the care giving stops, they have a huge loss - perhaps because they remember the 'before' caregiving times. Myself, who did not have a good relationship with my parent, yes, I will admit, I had and have a huge sense of relief - mostly because the caregiving responsibilities were on top of the contentious and toxic relationship.

But it is like someone else said, when you do caregiving, it is like you enter a vortex where everything else around you and your world no longer exists. You see it, but you are not part of it because the caregiving is the primary focus. When that stops, it takes time to readjust back into a different reality that no longer includes the caregiving. Many grieve, and there is no timeline on how long that 'should' take or how it should happen. Others, not so much. But, now you have to take some time to rest - mentally and physically and spiritually, and then relearn how to take care of yourself and start living life again. It doesn't happen overnight, it is a gradual process.

Kor100: Imho, after my mother passed away after having had to live with her from out of state, I continued on here at the Forum - for nine years. Therein lies the sense of purpose.

I know some people can be caregivers and do fine but others can't. I took care of someone for l4 years through thick and thin - far above and beyond - and then all of a sudden (I was so blind), I found out he was doing horrible things behind my back. To make a long story short, I had no choice but to resign as a Power of Attorney and walk away and sever all ties forever. But the impact of what he did to me (all behind my back) has affected me horribly and I will never get over what he did - he literally destroyed who I am. I pray he rots in hell fo being such a lying, deceitful, cruel human. know being a caretaker must take a terrible toll of people because they feel guilty if they lash back at the patients when the horrible behaviors and actions of the patients impact them. It does not matter why they have the horrible behavior, it is something that must never ever, no matter why, how, what, when and where ever be tolerated or the caretakers will be destroyed. Try all the "nice" ways to stop the problems but I assure you they won't stop - then do not hold it in and destroy yourself. Strike back to get it out of you. They will forget five minutes later. So if you don't handle the situations by stopping them before you are harmed, YOU WILL BE HARMED FOREVER. And if it continues, then walk away and place them. There are some people who just do not deserve people being caretakers to them. Learn when it is time before they destroy you. YOU COME FIRST.

Uprooting my life in order to take care of my parents happened gradually. As my parents became more dependent on me, my commitment to them increased and I eventually found myself only "visiting" my home and my immediate family for several years. When they no longer needed me, the transition back to my old life was not so gradual. It was like a slap in the face.

Not only did I find myself struggling to cope with grief over losing my parents, I also found that returning to my own home and lifestyle caused me some confusion and distress. My family had changed in the three years I had been "absent." Things were running smoothly without my contribution, and though I did not realize it at the time, I became resentful about their newfound independence.

I believe I grieved the loss of my father, the loss of my life, and the loss of being 'needed' by my daughter and partner. We grieve loss. Loss of anything that changes or goes away in our life whether expected or not.

I found myself in a dark place. I was becoming depressed and feeling desperate. I had lost my brother, my father, and my nephew over a one year span. Nothing was the same at home. People forgot about my family or at least I thought they had forgotten. I became angry because it was business as usual for the people around me and I was struggling to find one detail that was familiar to me.

Through another organization I am associated with, I met a counselor who I began to learn from. She taught me the steps of the grieving process, reminded me to honor my loved ones and to realize that I had just survived devastating tragedy. Realizing I am not alone and that I must go through whatever it takes as I deal with my feelings over loss of loved ones and other life possessions was the first step in beginning the healing process. Before that, I was just in a vicious cycle of emotions that I did not understand and I did not want to feel. I struggled with drugs and alcohol in my effort to make the feelings 'go away.' All that was a futile attempt at sanity which made me more insane.

I am not healed and I realize I will never be the same happy go lucky person I had always wanted to be. These tragedies are what shapes my growth into a more mature, thoughtful person. I have learned coping skills that have changed the way I handle day to day situations. I am a better person now, but my struggle with anxiety and sadness are ever-present. I have the tools to deal with my emotions that I would never have been aware of before my years as a caregiver, housekeeper, cook, nurse, planner, and all the duties associated with taking care of my elderly parents. Even as I learned to deal with the aging of my parents, I learned how to deal with myself and and my own personal conflicts and pain. At least now I am not avoiding or hiding from from the emotions, but rather, I am learning to feel them. I had given up my concern for myself and put all my energy and effort into their lives, forgetting to take care of me.

For anyone who has cared for aging parents and dealt with loss of loved ones and the changes associated with grief, I recommend a licensed therapist or social worker. To share your story with a counselor can help with recognizing the stages of grief and learning new ways to cope with all the emotions that arise from loss and change.

I think to myself daily, what will life be after my Mom passes and my life begins again. I've lost my relationship, profession,savings etc. I will need to sell my home soon after she passes. I won't be able to financial keep it longer than 12 months after she passes unless I can return to my profession and make the money I was making when I quit and chose to care for my Mom full time. Will I be able to have a life again is all aspects. I Know I'm not the same person anymore. I also have no anger about taking careing for my Mom. I'm grateful to do it. I've had alot of great moments with her and many frustrating, challenging ones. Holding on to the times that tested me, made me cry, scream etc is silly. It's not her fault she got Altzheimers. I will never blame her. She is my Mother and stood by me always even when I challenged her patients, understanding as a child, teen and young adult. I also will not hold any bad feelings towards my siblings for not having what it takes to show up and help me more often. You either have what it takes or you don't.

I do feel scared about my future and jumping back into my life. I dont see yet what that looks like.

I'm 100% changed as a person. I feel like I lost a whole decade sucked into the vortex of caregiving for my Alzheimer mother. The worst and most shocking thing was all the mental and emotional abuse heaped on me by my sisters. My mother was a narcissist, which I came to understand fully years into the caregiving and now there is more education on the subject, but what I didn't realize that my sisters were too. They jumped into the power vacuum that my mom's demise left. I was in the vunerable position of having moved in with mom to care for her after a million promises, and a agreed upon list of who would do what which all vanished once the door to mom's house closed behind me. In retrospect, the caregiving aspect, was easy. Allowing myself to descend into full enmeshment and codependency and domestic abuse victim, over the decade of caregiving was the hell I am recovering from. It started out small, like a sister promising to be there on a Tuesday night so I could get out of the house and have dinner at a friends, only to be stood up. Then told, ever so sweetly that something came up with the kids (always the kid excuse even though they were older and hubby was home to help). Then, a new day of their choice and time was decided on, only to be told after waiting an hour, that they forgot and I just need to be more flexible. A couple of weeks of this and I got the message loud and clear that this pretending to be there was just a fun game for this sibling. Another sibling would "visit" from out of state staying with me at mom's. She would take mom for lunch, then the other siblings would have a big dinner party for her as a thank you for "caring" for mom. I'd be left out of the dinner party because that was my time off for a few hours that year. Then, the next day the visiting sibling would break something big in the house. One time she broke all the nobs off the washing machine, another time she pushed the garage door out opposite from the way it swings leaving me without a garage door and way to secure the house, another time when she took mom to the movies, instead of lunch, her and another sibling who went with, did not help mom get up and out of the theater when the lights switch from dark to light. Instead, they walked on ahead to the lobby leaving mom to fend for herself causing her to tumble down the movie theater stairs and break her arm. Of course, sibling flew away leaving me to handle all the chaos created with each visit. You might say, why did I allow her to come? Well, all this was a slow motion train wreck and I was in absolute denial that my sister could be doing these "accidents" on purpose. Plus, so sad, but that one day off was the breadcrumb that was thrown my way for accepting the abuse. I now know this is all part of narcissistic drama. So, after six years of caring for mom, I had two years of extreme anger toward my siblings (and myself for being so naive) who I have very limited contact with. It's mostly through the lawyers when they try to change mom's trust in their favor. I am pulling out of the anger now and moving toward spirituality, seeing this world as a "learning school". I feel sorry for my sisters now that they felt they had to be so cruel to me. I am making new supportive friends that have caring kind souls like my own. I pray a lot more. I have an "imaginary" angel that I call on all the time when I feel especially lonely. The hardest thing for me right now is that my whole extended family sees me as the bad guy since my three narcissistic sisters set about with a huge smear campaign and have reinvented all my caregiving years saying that it was them. Being older, it's bittersweet to look back at all the chapters that have closed in my life. At 58, I'm trying my best to think I have a few more good chapters to go through but it's hard with the memories of an Alzheimer mom etched into my fiber. Am I looking at a future mirror? I choose to think not.

I am not finished caregiving for my mother… but I am much grumpier according to my husband. And getting bitter, definitely. And I just found out my non-driving sister has pancreatic cancer. My heart goes out to her and perhaps I FEAR the family will say that I can drive my sister to appointments. The guilt corrupts you, but I am NOT going to help drive after this initial phase.
I am stressed and struggling with managing mom’s home care people and getting things set for assisted living in 3 months. I tell myself not to feel guilty when my younger sister weeps, when she finds that an item has been disposed of. I give warning to family and if they don’t show up I sell it or donate. Or trash. Mom has a large house, my siblings are welcome anytime to rummage through the items. Yes I am definitely grumpy. I thought after dad’s passing, caring for mom would be a lighter burden. it’s been harder. Siblings were around more to help during dad’s shorter illness.
Being by nature an optimistic happy person, I hope a nice long long vacation could be all the therapy I need after mom can be safely cared for by assisted living personnel. ( Of course I know I will be visiting her a few times a week, but good Lord I need a vacation from life.)

My mom passed away last May. I keep thinking I am doing OK, then as I get better, I realize I was struggling. I do get better. It was kind of a odd summer, with lots to do for my mom's estate, and some family events that were good for me, but required me to come out of myself a little more than I felt ready for. I was looking forward to get back to normal with the start of school. I babysit my granddaughter during the school year while her parents teach. I thought that I would have a lot of free time while she was in her mother's day out program twice a week and with her other grandmother on Wednesdays, but it turns out I have enough to keep myself busy. I have no idea how I managed all that plus overseeing my mom's care.
I am not bitter. My mom gave plenty of herself raising me, and I am glad that I was able to repay her. I do have a lot of painful memories of her last year. Mostly I block them out - not on purpose, but like wincing away from a painful sore. They are like a mountain that I can't see over to see the good memories. But this weekend we took our granddaughters to the beach, and that brought back some good memories of my mom, and this morning one of the bad memories floated to the surface, and I was able to look at it, so I think that will get better over time.
Did I change? I think I am more aware of pain and suffering in the world. All the effects of the Covid-19 pandemic have brought that home to me too. Hopefully I have more compassion.
I haven't gone to therapy. I heard of a 13 week grief recovery program at my church, and I know the couple who leads it. I considered going, but decided I would rather work in my garden.
Be gentle with yourself.

I’m glad for my caregiving experiences. I feel it helped me grow closer to my mom, my dad and also my husband. I saw all 3 through their illnesses and hospice. I learned a lot, grew stronger and more confident about taking on challenges. I miss them all, wish we wouldn’t have had to do it, but I’m glad I was able to be of some help to all of them since they needed it.

Life after caregiving has been a challenge tbh. Perhaps it's because I assumed I'd have a lot more freedom, opportunities to go places etc but here we are still rather limited due to Covid so I'm feeling very isolated. The folks at the LTC kept in touch til the 6 month anniversary and since then they're no doubt busy with their own lives which is to be expected. In my case the last several years has done permanent damage to any relationship that existed between my brothers and I so I have my husband and his side of the family and that's it.
As for bitterness, no, absolutely none. I'm honored that I was able to give both my parents comfort in the final years of their lives. They would have done the same thing for all of us kids.

As for changes in me, we are currently witnessing a situation on my husband's side of the family where a cousin is not stepping up and doing his part for his elderly parents. This unemployed cousin is leaving all the work to his sister (who works fulltime and her husband (who's very ill) Perhaps it's PTSD on my part having just gone thru the same thing, but I'm disgusted by the cousin's behavior. Nobody said it would be easy to take care of elderly parents but if we're lucky we get an opportunity to help them.

I was my mother’s frontline caregiver for 10 yrs. We were like oil and water. I never felt she appreciated me, although her hospice team said she would tell them she appreciated me. But she never told me to my face. She just expected me to care for her from day one. Like it was my obligation. I was the only sibling left who was still alive and capable. She passed in August of this year. I always promised myself I would spread my wings and do what I wanted to do when she was gone. I’ve yet to feel the freedom I should feel. I have a blood cancer that I’m still treating for for almost 5 yrs. I’m up and down with that. The only thing I can be happy about is that when she passed, she did so quickly and without much ado. It was as if she decided enough is enough and she was going to go out her way when no one was looking. 10 yrs is a long time. I’m not bitter. I know it will one day make sense. Add it to the bucket list of things I accomplished in my life time. Trying to move in while I still have the energy to do things.

I always thought you should keep your parents at home with you as long as possible, so I had conflicting feelings about my loved one staying in the pretty nice facility she went to during cancer surgery. My head knew she needed 24/7 care, but my heart struggled and but because she still had very lucid great days, but some not so great mental times too. Unfortunately out of sight is out of mind and I still have very short lived pangs of guilt but could never do the job now mentally or physically. I know she especially needs nighttime supervision and I would be asleep.
I think she blames me, yet I have to do what’s best for her.

I felt a great sense of loss. The loss was not only for the person, but also for my responsibilities. The caregiving had given me a sense of purpose and structure. Try to keep yourself busy with your life after caregiving, preferably with meaningful activities that give you a sence of fulfillment or accomplishment.

I went through a lot of self-reflection. At first a numbness for the first few months, overwhelmed at having to empty out and disburse an entire household, and handle all legal matters. Then anger and even some displaced guilt at some of the circumstances of my mother's passing. Nostalgic for the times I had with my Mom, her vibrancy, her funny ways. Sad I will never get a minute of that back. Relieved at the time I now have back to give to myself and my family and friends. It's a bittersweet mixed bag of emotions, ups and downs, and long plateaus. I am grateful for being able to look back on all I did and all I learned, and how it made me a better, stronger person. Now I am trying to to get back to some long neglected interests: reading, learning a new language, cooking, meditation, crafting and re-organizing my home. Give yourself plenty of time - everyone has different needs - it's an evolving process of renewal and a rewarding one if you allow it to be.

If you have been care taking for many years, you may feel a little at loose ends for a while, wondering what your "purpose" is without someone needing your help 24/7. Pay attention to what interests you and what you might like to do with your time now that you have more of it. If you miss being needed, you can certainly find opportunities through church or community organizations to volunteer your help. If your own interests, goals, activities were put on hold while care taking, don't spend even more time being angry about that. You did the right and necessary thing when it was needed. Life does not go in reverse. Now you look at where you will go from here.

Funny this came up. I've been kind of struggling. My dad passed away seven months ago. When I think back, I was there for him since 2002 when my mom passed. However, he moved in with us June 2020. It became apparent after two weeks, that he could not be left alone. With a lot of thought, my husband and I decided I would resign my job to stay home. My dad passed away March 2021 here at home. Seven months now and I still come on this site because it helps to know how others are dealing with caregiving and beyond. I in no way feel bitter. Sometimes guilt. I know that my dad's health was not good. And I knew there would the "day" it would be over. I am changed. I'm getting older too. I get inside my head too much. I still do walk-throughs of our old routine when he was alive. I wonder if I should go to therapy. But then I don't know what they would tell me that I don't already know. Grief has no time. When you become so intimate with your care recipient, that you are an extension of them, you'll feel lost without them. I truly hope you are not feeling bitter. And if you want to go to therapy, be ready to talk about all of it. The good feelings and the bad feelings.

Tired , exhausted , sad , angry . Grief. Counseling highly recommend takes a toll on you physically also . Give yourself a few years to recover.

Sad the person is dead, Happy the loved one is no longer in pain. Relieved it's over and Glad I was able to give them the Best Care so they would have the best end of life experience feeling loved and safe

My husband passed 2 years ago, 94 yo mom four months ago. I have found grief group thru senior center and continue to attend when I see them start next round.I cry almost daily. No children so Sundays are the most difficult as no human calls me.I went back to work after caregiver for 10 years. And a hobby or exercise routine that involves being with others helps

After placing my brother in a nursing home, I was able to go back to my career. I was able to re-organize my home. However I am still working to repair the damage caused to my relationship with my husband and children due to the stress, anxiety, and not being present for them as a wife and mother during the time I was caregiving. The damage to interpersonal relationships for caregivers is real and life changing.

I lost my mother last year after 3 years of being her care manager. I still monitor this site, keep my phone close, mentally pick out clothes for her when I shop, and get nostalgic when I drive by her favorite restaurant.

I had both my parents with me for a total of 7 years ( 2 with Dad with ALZ and mom here frail for the rest of the time) My hubs and I are getting back to "us", and it has taken awhile! Too used to having to feel like we need to rush home in "case" something happened,, getting used to being able to sleep without one eye open.. although I still sleep badly. Being able to go away for a night or two. It takes time, and we are still adjusting,, but it will get better.. I hope!

Kor100, life after caregiving? I feel like *I* need a caregiver. This was a job I wasn't trained for, nor had a mentor to help my find my way. I had to wing it and that wasn't my nature. I knew how to do so many things, but this caregiving was a challenge I kept failing at.

My emotions were all over the board. I resented that my parents had a wonderful retirement doing fun things, etc., and I never got to have the same type of retirement. I was still working at my career, something that I worked hard at and I wasn't about to give it up until I was ready to retire in my 70's. I loved my job. My Mom refused caregivers to come into "her house" just to help her with minor things. Dad wanted to downsize but Mom refused.

I was pretty much their wheels. I believe they still viewed me as that 20 something to loved driving, instead of a person who was now in her late 60's who got panic attacks when driving. When I mentioned the panic attacks to my parents I got the "but who will drive us?" statement. Mom refused to ride with a stranger. A god-send was grocery store curb-side pick-up and/or home delivery where someone else did my grocery shopping.

Talk therapy helped somewhat, at least I had an ear that I could tell all my feelings. Friends were no help as they never had to experience caregiving of parents.

It's been 4-5 years since my parents had passed in their late 90's. Every day I am reminded of the stress as I now have tremors which can be controlled with meds, but makes me very sleepy. I now hate traveling, dining out, or even going to the movies. There is that ingrained fear that my cellphone would ring saying someone had fallen, please rush to their house. At least I no longer jump out of my skin when the phone rings [with my parent's telephone number].

It certainly takes time to adjust to your "new normal," but once you do, you are able once again to find the joy in the little things in life.
I lost my husband of 26 years last Sept. after caring for him for many years. I was lost for quite some time, and seemed to wander around my house wondering what I should be doing, but with God's help, and the great people in my local caregivers support group, I finally am ready to start enjoying my life again, and am excited to see what the Good Lord has in store for me next.
So yes, there is hope and joy after caregiving. It may take some time, but it's out there if you really want it.
I will also say that it's important to sit in your grief and allow yourself to feel it. Don't run or try and hide from it, as that will only prolong the process. In order to move forward in a healthy manner, your grief must be dealt with. And I feel that that is why I now can look forward to my future, as I allowed myself to sit in my grief.

I feel a bit like I'm unemployed, but otherwise, it feels like it did after I dropped my last kid off at college.

It's only been two months, so I'm still deep in settling the estate, but once I finish that, sell my house house, move to another state, and get my son married off next spring, I'll have to figure out what my REAL purpose in life is after 30 years of raising kids, and caregiving.

I think it depends on who you were caring for- a friend, a parent, a spouse. I can only speak on the loss of my wife. Certainly any loss can be traumatic and cause the person to experience a variety of emotions. Sadness, regret, loneliness, anger, grief, and relief are just some emotions that can surface. The depth of emotions one experiences is usually related to the extent of the relationship and its duration. For me, the loss of my wife of 52 yrs required some soul searching and changes in my life. What do I do now? Who am I without her? How do I recover and build a new life? So after almost 4 years, I've accepted her death, the sadness is gone and I've overcome my grief. However, I still feel a sense of loneliness and I miss her companionship dearly. So am I a different person? No, I don't think so, but I do live a different life that I'm comfortable with and family ties are still strong.

Your whole world changes. Just as it changed when you became a caregiver.
If you wake up at 12 midnight, 4 am to change someone, you will for a time wake up at midnight and 4 am.
If you have to be back at the house by 3 so the hired caregiver can leave you will constantly be looking at your watch to make sure you have time to get home even though you don't have to, you will rush through shopping because in the back of your mind you have to get home.
If you have a hospital bed with a motor that you thought was so noisy 6 months ago, you will now be struck at how quiet things are.
If you have been caring for a spouse the realization that not only are you no longer a caregiver but you are now a widow (or widower) and you have to deal with the emotions of that along with having to reidentify yourself as an individual.
Don't do anything major, they say for at least a year do not make any drastic changes.
If you need to talk find a Bereavement Support Group, many Hospice will offer one, some churches as well. It is good to know that others are going through the same thing and it can help talking.
If you need more than a Support Group talking to a therapist is a great idea.
Grief takes time. There is no way to say how long. Each of us is different.
Keep busy. Find something that you like doing. Volunteering, getting a job, start a project that you have put off.
there is no 1 right answer.