Former caregivers, how have you adjusted to your new life?

Dear dearfranca, My Dad died 2 years ago. I am finally crying less (with counseling), but I have felt and thought those same things that you say so perfectly. "become like a child" -yes. "decline is devastating" - yes, "so much a part of me" - yes... Such a loss.
I think we also become such a part of them that we almost lose ourselves. But I do think this is one of the most profound experiences someone can ever have. The journey that you describe. A gift really. I too would do it all again. Thank you for your post. I hope you will find comfort in time. So sorry for your loss.

I think as as a caregiver to a parent, the roles reverse and they become like a child of our own. I looked after both my parents in their own home for 20 years. What no one understands about caring for our parents is that as each day passes we see and feel that they become more dependent on us. We all love to see our children go from diapers to independence, but when we are part of our parents decline from independence to diapers it is quite devastating. My father became so much a part of me that after over 3 years I still cry each day for him. The only people who will understand our pain is each other. Our siblings do not feel the same way and just say "get over it", but for us it was a journey filled with joy and pain and heartache. Even though the responsibility was huge, I always say that I would do it all over again if I could. I pray a lot each day. I have a lot of support from my family but not my siblings at all.

Thank you. :)

You are right Little Midnight.............by the way, I like your name too! :)

Gershun,

Today is Jan 1 of a new year, and I am going to plant something.

I’m treating today as a day of healing and renewal after years of caregiving and now grief.

I know its just symbolic. But it sure is nice to think about caring for something in a different way...a way that helps something grow.

Maybe an idea for you, too?

Funny Send, I read the heading for this thread and had forgotten I even started it.

I sometimes think I am getting over my Mom's death but just fooling myself..................not over it, not by a long shot. Just masking it. Now that Hubs is away for a couple of months again I can feel that black hole beckoning me again. I need some kind of an outlet but I don't know what. I've applied for jobs. I think my age and the big gap in employment while I was caring for Mom has left my resume looking kind of spotty. I really don't know what to do. But I feel the black cloud swooping down on me again and I'm getting scared. :(

Barb,
Still going to work is a big thing!
Give yourself some credit and a big hug from me!

My mom died 4 months ago. I am finding myself mostly paralyzed and not doing anything outside of going to work. Hoping the new year will bring some clarity.

Gershun,
Thanks for starting this thread. I am bringing it back to the top, because I want to hear how your new life is going after the move, and if you have any plans for the new year?

We loss our mom in September, 2016... no quite a year yet. It is difficult... former friends don't even call. I believe it is out of ignorance or not caring. Now that we have time to go out, very few invite us out. I've reached out to some, but it has not been reciprocated. Sometimes, I feel so lost, so empty. I miss our mom so much. She was my travelling partner, locally as well as to other states. I am the only girl with 3 brothers. My brother next to me was nothing but trouble before our mother was diagnosed with dementia. My youngest brother (married with 3 children including 1 with autism and 1 next to me with 3 children, too (who are not close). My middle brother and I are single and no children. My youngest brother and family were there for us as much as they could along the journey. During the 8-9 years my middle brother and I cared for our mother we worked full time, friends/family were few. The neighbors (all but 1) were h*llish. The things we went through were unbelievable... I could write a book. They seem to be jealous and resent the fact that we took care of our mom. I am so tired of being treated like cramp. I've learned to do what's best for me. So, I am going to keep it moving. I like me. I love me. My job has been keeping me busy, too busy at times. But it's keeping me busy. I started back attending church.. not ready to join any groups yet (this can be overwhelming too). Feel like I need to be re-fueled or rejuvenated. No major changes yet. Don't want to become overwhelm... job is doing that. I have to work... as we all know caregiving takes some much from us emotionally, psychologically, physically, and financially. Prior to all the caregiving, I was busy in church ministry, involved in volunteerism, extended family... a full life. Now, still have not found my new normal, though. I know what I don't want... but I am trying to move forward. I have to be patient with my own self. Not beat myself up. I, too am looking for a new purpose to fulfill while still on this earth. The future is uncertain, but I am trying to move forward a day at a time, a week at a time. Hugs and prayers to all during this life journey.

As of tomorrow, Mom will have been gone for one year. It's been a rough year all the way around. We only just placed her ashes where she wanted them this last weekend, which involved all of us (or as many as could make it) traveling over 500 miles one way to Mom's homeland, which was a financial hardship for all of us, but we made it. (Except one of us due to work issues.)

I am still dealing with the estate issues due to Mom being on Medicaid when she died. The emotional issues are not so bad now, but they still crop up now and then. I surprised myself by being very emotional as we placed her ashes. I didn't think it would be that painful, but it was, even almost a year after her death.

My DD finally moved out 2 weeks ago, but still requires my help in the form of transportation at least a couple of times per week for this or that - but at least now I've got this house back again, and can start recovering from a year of having DD and her kids here and the toll it took on the house - and me. She's got some serious learning to do about budgeting on her own, and she's already getting some lessons in that.

So...how am I doing, one year post-caregiving? Ok, I guess. Not as well as I had hoped. I thought by now that I'd be volunteering and enjoying a life of my own, with the majority of the financial and estate issues settled, and well on my way to being back on top of my finances. I'm still working way too many hours to try and make ends meet and recover financially from caring for Mom and having DD & kids living here, plus having a lot of travel required this summer, which is a financial burden as well. (They're not vacations, they're necessary trips for events I can't control - like placing Mom's ashes & my son's graduation.) I have one more trip ahead of me - the biggest and most expensive one - and then I can finally stop traveling for a few months. It just seems everything happened at once and it's been hard to even catch my breath since last summer. The whole last year seems to be kind of a blur.

I guess I don't have any good advice. I'm still just making it day to day myself, though not overwhelmed with grief as I was at first. Just overwhelmed with everything else.

bersamin, it sounds like you loved your Mom so, so much. Three months is nothing. You are just beginning the grieving process and it sounds like you have already made some good plans for yourself. I'm sure your Mom is so proud of you.

My Hubs and I are in the process of looking for a new home. Where we are now is five minutes away from where my Mom lived and I think a new neighborhood will probably help me. There are too many memories here. I feel almost disloyal to Mom wanting to move but I also feel like she would want me to move on. I haven't reached that point yet where I can think of her without wanting to cry. I pray that day will come soon.

My mother died three months ago and she was 100 years old. She had dementia and heart disease but she was strong enough that she would attend the local senior center with her caretaker each weekday. She would pray for all the other seniors and they all loved her and they all looked up to her as the matriarch of all the other seniors, many in poorer health than she. I was born when she was 40 years old and I was her only son out of my four older sisters. My father died in 1996 at age 84 years. She lived alone from age 79 until I was able to move from my teaching job at a university when she turned 83. In the 17 years that I was with her, she was still very strong, but she started to have falls while I was at work and about 5 years ago, she fell and broke her right arm. She was 95 at the time. I moved out of my room and set up a bed next to hers. I set up the room so that if she needed to use the porta potty that I set up next to her bed, I would be able help her. I was able to find a great person to care for her during the day and when I arrived from work, I would take over her care. I remained single and I was devoted to her. In these last 5 years, we truly traded places. She grew more fragile and the dementia increased and she became totally dependent upon me. I used this website to teach me about incontinence, UTI, sundowners syndrome, and so many other skills that a male caretaker needed to learn. My sisters helped me when they could but for these last 5 years, she was my main responsibility. She was my everything as well. She became my reason for living. It the 3 months that she has been gone, it has been very hard. I miss her a great deal. When people hear that she reached 100 years, they say that she lived a long life. While I do realize that, and while I do remember the hard times, such as her insomnia, the incontinence throughout the night, the fearful trips to the ER, Docs in a Box, when she was ill, the dementia, the anxiety she had over her girls which she saw as adolescents when they were in reality in their 60s, I miss her very very much. I cry most days, I feel lost at times. I go to counseling, I read books on grief, I garden and take care of her beloved roses. I build an altar to remember her at home and I have photos of her throughout the house. While I am not much of a traveler, I have plans to work around the house and on the house that she left me. That is what she wanted me to do fix up the house. My job keeps me busy but now I know that I also need to reach out to my family. I know I need to reinvent my life. My mom was interviewed for her 100th year birthday and she said, "When I die, don't cry for me, pray for me instead that God will grant me joy and comfort in heaven. And I pray for her everyday and I pray that God will help me find a new purpose to live my life for. To all the former caretakers, I am now a member of the club and I am grateful for all of you and what we did for our loved ones. I know we will find our way.

My mother lived next door to me for 5 years while I took care of her. I see her house every day. The people we bought the house from are very nice and I've been in their house many times. They have changed some things, but some things are the same. It was strange going in at first. I still think of her when I look at or am in her house. My mom has been gone 2 and a half years. It does get easier with time. For me it was very hard losing her, but the year before her we lost my 55 yr old brother then a year after my mom we lost my 60 yr old sister, so there's been a lot going on in my head beside just losing my mom.

Its been 3.5 months since I lost my Dad. 17 years since I lost my Mom. 11 months since I lost my dog. I feel the weight of loss and what I've been through as a caregiver.

Some days the weight of is heavy. Some days its barely noticeable.

After being busy beyond all limits, I find myself seeking balance, healing, renewal of self.

It's as if I've been wounded.
I need a bit more time to heal, but also shouldn't focus too much on the pain.

So when I'm not working, I seek things that heal me. Time with a friend. A massage. A special treat. Sunshine. An extra hour of sleep! Boy I would've loved that a few months ago! So...I'm doing it now.

When I have excess energy to burn again, then I'll take on volunteering, hobbies, travel.

I lost my mom 10 months ago. Some days it seems harder than some of the first months. I feel sad a lot lately. Maybe it is because I do not know what direction to go. I gave up my career-lost too much to go back and not sure I want to. But at age 60, I really need to return to work. It also would keep me occupied. Nothing excites me or appeals to me. Guess I am just depressed. Some days better than others. I think what is the hardest part of all of it, was how ugly my siblings were when my mother became ill.

I had asked for help which I never got until her illness. Then they came swooping in, taking over, verbally attacking me, making up lies and calling me names. It just added insult to injury. I miss having siblings, but they were not there when I needed them and they had the nerve to get me written out of the will after they brain washed my demented mother.

I know what I did for my mom was out of love and duty, but I also realize I didn't do myself any favors. So, I too find it hard to move on, because these things drag me down. I do have a counselor and she has told me I am a strong person to endure what I did, but I cannot seem to let go of the hurt. I miss my mom and am sad that her life ended knowing there was sibling issues. In ways, she was to blame, but she herself did not have the tools or wherewithal to stop things. I think time is the healer. And for me, maybe relocation as there are so many memories that pull me down or remind me of what transpired. We all have our own journey.

This is an excellent topic. I don't have time to write right now but I will later. This is a very important thing to talk about. Just my own experience - it is a struggle. I do think there is life after.

Reading this question and the responses, I am glad that my children are not so emotionally close to me that my death will cause them more than a few weeks' grief. I hope that their lives are not taken up with taking care of me for years, and so I have invested in two long term care policies (one is convertible into life insurance) to make sure I can go to assisted living, memory care or nursing home as needed and that they won't have to make any sacrifices. I felt grief when my husband died following a major stroke and several years of gradually increasing vascular dementia--but it was grief for the man he once was, not for the man the dementia had created. After a few months of confusion, I was able to get out and enter into new activities, which I had not been able to do for several years...church, senior center, etc., even a part-time editing job. I am able to travel to all the countries that my husband and I planned for but weren't able to see because of his illness. I wish he were here to see it with me, but I don't mind traveling alone as none of my family or new friends are interested or has the money. Life goes on, and we must go on with it.

I help others on this site as a volunteer job. You may find that you would like to do the same.

Thank you for mentioning griefincommon.org, I will look into it.

Thank you all for your shares. I am still caring for mom 89 & dad 92. You're shares have helped me a lot. I have much hope that when they cross over..I will go on with a light heart and lots of loving memories.

Great answers everyone...........keep em coming!

I lost my father almost 3 years ago and I still feel grief. I cannot go into his garden and not cry. I sit in his "lazy boy" chair where he did all his thinking and that's where I have my best ideas. Every spring I see him in all of his fruit trees and flowers. I see him all over the house and all the repairs and renovations he did with my sons. For the past 3 Decembers without him, I have been able to pick a random rose in the garden.( I live in Toronto). Even though I cry and probably always will, I feel like he is here with me and my children. His house was his pride and joy. He was a proud citizen of Canada and loved his family and his home more than anything on earth. His house is where I choose to live the rest of my life in. Even though I cry when I remember his and my mother's love for their family and their home, it swells my heart with joy and love and sadness and a longing for being able to re-create these emotions for my own children. Grief is one of the most painful emotions we feel. We only feel grief for the people we truly love. We grieve for the the good things we miss, like the love, the laughter, the advice, the help, the parties and celebrations of joy so I have chosen that the best way for me deal with my grief is feeling them beside me, inside of me, in their home until the day I join them in Heaven. That is my choice for moving on with my parents passing. I know that everyone has their own way of dealing with loss. My opinion is that each and every one of us need different closures with each relationship we have. There is no right and no wrong. I know the pain is replaced by joy, but it does not happen overnight. When someone--be it a parent, a spouse, a sibling, a friend, or God forbid a child passes away, we are blessed with the wonderful memories they leave us with. Those sacred memories are engraved in our brain forever no matter where we live. Some of us need to be close to where those memories were created to feel closure like myself and some people need to be as far away as possible. Each one of us are so different and each one of us deal with grief in our own way. I hope that all of us "CAREGIVERS" can find our peace. My siblings are of no help to me. They only care about the "$MONEY$" They say that I was of no use to the family. I know deep in my heart how important that my children and I were to the survival and the happiness to my father. We were the reason that he felt like getting up in the morning. We were the reason that he followed his diet(s) to the letter. We gave him a reason, an incentive, a purpose to keep going--to live--he felt NEEDED and my doctor told me that elders need to be needed in order to have a motive to keep living---so they put caring for themselves and living longer and healthier as their first priority and isn't that what we all want??? to be loved and needed? As caregivers we should feel proud and happy that we were completely responsible for granting our parents their last wish in life. They lived in their own home and made all of their own decisions. So always feel proud and just let's live the rest of our lives the way WE decide. Let us not feel guilty of our own choices to move on, no matter what our choices are. Do not let anyone especially your ungrateful siblings tell you how to live, love, or chose where you live. You have sacrificed so many years to care for THEIR parents and make their dreams a reality and now it is time to live the life that will make you happy. It's time that we put ourselves #1. Make OURSELVES happy. Sounds simple but for most of us--the reality is---it's probably the hardest thing that a caregiver can do. LET'S FINALLY PUT OURSELVES NUMBER ONE!!!

Good thread, Gershun! Walking others through their special journey can really bless others, letting them know they are not alone.

Dear Gershun, thank you for posing this question. So many of the answers have been so beautiful and helpful to me. The most beautiful 5 words a friend wrote to me after my Mom's death a few weeks ago are "You were there for her." Prayers for your future happiness.

I will have to be the outlier here! My mother lived very happily on her own for about 15 years after my father's death. Within the last 5 years she started to decline, with dementia, and it was a nightmare. (I was the sole caregiver, etc.) She died about a year ago after I got her into a nursing home for two years. Frankly, it was a relief, in a way. Neither was a good parent to me, I was abused and neglected, often told how I 'ruined their lives' by being born. But I did my duty, I did the best I could, and I will go to my own grave knowing that I did....I do think of them now and then, and there are times when I get teary. I don't have all that much longer to live, myself, and my feeling is I deserve to get the most out of it and be happy. My husband just retired and I am hoping we can BOTH get the most out of what time we have left to us, before our own sad decline. (I don't know who is going to 'be there' for us, as I was 'there' for my mother.) I think keeping busy, not dwelling on the past, and doing good things for other people - or animals - (all of which I do!) and realizing, this is it, this is the home stretch, this is 'your' time now - that is better than moping or regretting or mourning endlessly. (if you are mourning endlessly, perhaps there is a grief group or counselling available. Even online. One cannot wallow forever - do you think your loved one would want to see you this way, after they died?) I am not saying I never grieved, but caregiving almost killed me.

My experience is different than yours but is not meant to be an example of how things should be. In my lifetime, which -- so far -- is 86 years -- I have been a caregiver to, and lost, my parents and three husbands. Although I found it difficult to accept that they were gone, each loss left me closer to being in touch with who I am. Perhaps I managed to be successful in moving on because I didn't think of it as moving on, but as moving toward my real self. However, I do miss the closeness of caring for someone I love. At this point in my life, I don't want to take on the responsibility of having a dog or cat, but if I had one, I would enjoy the closeness of caring for it. I don't consider myself a nurturing person, but I found it easy to become a caregiver and not difficult to move on from the role.

I aided my dad in his home for a year, then moved him to my home for five years. My dad was mentally abusive to me, I had no help from siblings. As he became more difficult to care for, physical needs as well, and being a a very large man, we decided on residential care. I went to family counseling for about 1 1/2 years and regained my outlook for the positive. My relationship with dad improved over time, I have no regrets. I visit him every other day, he is now in hospice, bedridden, demented. Even though there were many tough days, I have many fond memories in my heart and mind. And I have peace with God, it was all worth it.

Everyone's path is different. I do believe there is value in the fairly standard refrain that you should wait a year before making any big changes when you suffer the loss of a/the person central to your life. It can be hard to stay where you are because of all the memories. But in time new good memories will be created and the intensity of the loss will decrease. If you still want to move a year later, do so. But there may also be comfort in having the same home, neighbors, grocery store etc. around you. I would think it hard to lose nearly everything familiar at such a difficult time.

For me I was much like Gershun, all was said and nothing left undone. So there was not a tremendous grieving process. Being single with no offspring, my parents were always the dearest ones in my life. They worried about how I would cope when they were gone. I had moved here to care for Momma when Poppa passed, and she passed in this home. I have no real friends near me.

The first 3.5 months I sat on the sofa and watched TV. I think the long caregiving itself required quiet recuperation time and I really was a bit lost, I no longer had any purpose to my life. The last couple of weeks it has been time to pull myself up by my bootstraps. So the new rule is a minimum of two hours of work in the yard or indoors five days/week and I must start by 10:00 am (failed at my earlier 8:00 am target). The last year and a half, with Momma's further deterioration, things were let go. There is much work to be done. I am also looking into; an art class at the junior college in town for this fall, possibly doing some volunteer work, and assessing my finances to see if I can get away with not going back to work. How does one create a purpose driven life that will bring fulfillment? It always happened organically before.

I had little support from siblings during years of caregiving so I never got to sell my house, plus I inherited my parents home on a lake in a rural area. I have decided I will live in my parents home and sell mine. I will make some changes to the house as it still feels like theirs, not mine. In time it will feel like mine.

It is not uncommon for me to cry for 20 seconds to 4 minutes most every day, but I am not sad or depressed. I just love them and miss them, and invariably something happens that points out their absence in my life. I wish I had the magic pill for everyone that makes this transition seem easier or quicker or defines a clear direction forward. I really think it is a unique path we must each define for ourselves. My heart and respect goes out to you all. If I had it to do over again I would not change the path I chose as a caregiver, I hope you feel the same.

I lost my father in 2007. It was a family tragedy. I was a mess for a very, very long time. My father was the family rock, our hero. To have him no longer physically on this planet was just incomprehensible to me.

Soon after he expired, I jumped into caring for my mother fulltime as a way to escape, to not talk, about my father. I avoided anyone or anything connected to him. I have to believe my mother was/is still with me because I'm still learning to grow and move on with my life after the deep and painful loss of my father. I believe that when the spirit/God/The Universe up above puts me where I should be in my life's path, then it'll be time for my mother to pass away and be with my father. I can actually feel my life is finally coming together.

Solo caregiving both parents has made a much better person. This journey has taught me so many invaluable life lessons and these tools are what I need to achieve my life goals, to complete my Bucket List. I have no fear to go for my dreams after surviving the depths of darkness in my caregiving journey...I came out the other side a brand new me; my version 2.0 is ready to embrace all of life's opportunities and blessings but I'm better capable of handling life's troubles. No doubt I'll be super successful so I can give back in my parents' name. My father was an immigrant and he dreamed of establishing a college scholarship for international students. This is on my Bucket List. After my father expired, I adopted a few cats and dogs for my mother to nurture and I've seen how much of a difference they've made in her life, in our lives, that I can't imagine a life with out pets. In my mother's name, I want to open up an animal rescue. This is also on my Bucket List.

I'm still adjusting to life after caregiving my father and still caregiving my mother. The adjusting will never end. I'll just adjust to life as it happens.