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Caregivers Who Have Lost Someone
Life after caregiving
So, what has your life been like after caregiving? I'm wondering because after years of caring for parents and worse with this disease how are you living your life now? On the caregivers message board we know what that was like. And, when I read the desperation and plea for answers and relief it's almost like I lived that in a dream.
What are you doing to keep going after the storm? Let's share thoughts and ideas to maybe help each other get through this stage.
It's been just over 5 weeks since my mom passed after a long journey to find peace. I find that my tears come at strange times when I least expect them but I've stopped apologizing for them. Nobody at Target needs to know why I'm crying in the snack aisle! (I bought Mom every type of chocolate snack I could find in an attempt to get her to eat.)
I'm making my way through all the legal aspects of a death now. Burial trust, life insurance, annuities, etc. But I find myself thinking about a pedicure and a massage; things I hadn't thought of in ages! We went out for dinner with friends over the weekend and I even took time to put on make-up and jewelry instead of just throwing on a sweater and jeans and running out the door. My girlfriend noticed and commented that it was nice to see me more like my "old self." I don't always feel that way but I do know that for the first time in what feels like forever I can breathe.
My husband and I had hoped for a break but it wasn't meant to be. His father is in later stages of dementia living in assisted living with his mother. She had a stroke one week ago and is unable to return to their facility. That puts his father in a position of not being able to stay there either. They will both need to be in a skilled nursing facility with memory care. My husband is POA so the responsibility falls to him to find a new home for them. He is blessed to have 2 sisters that are right there in the trenches with him so that lightens his load a little.
My father also has dementia and is living in an assisted living facility but will need to transition into memory care soon. I'm hoping his path will be smoother than Mom's. But whatever comes, I know I can handle it.
Take a walk. Get a pedicure. Have lunch with friends. It's baby steps. Don't beat yourself up if it's a bad day. Just treat it as a bad day and then do your best tomorrow. And know that you are not alone!
After a year and four months after the loss of my mom, I am still trying to find my place in the world. After searching for so long, I finally found a job but I absolutely hate it. I only accepted it out of desperation and for the money. Don't get me wrong, I am grateful to have it but at this stage in my life, I was looking for more fulfillment at the end of the day. The majority of my coworkers are 35 and under and looking for status, money and promotion. At age 51, I'm not looking for that any longer. At the end of the day, I want to feel as if I helped someone not just help a large organization turn a profit. It's a call center job, the hours are terrible, and it's extremely stressful. It is the opposite of everything I was looking for in a position. The pay is decent but that is it. I just feel if I am to face AD at some point in my future, I need to squeeze as much joy out of life now. I need the money but I very unhappy so I am again going through that "stuck feeling."
Interestingly, the person I would normally vent to is gone. I am still grieving my mom and think about her everyday. Spring is upon us yet inside of me it still feels cold and dark. My friends and family say I should start dating but I wouldn't dare unleash this hot mess on another person just yet. I thought after a year the clouds would lift but it's still cloudy. Just waiting for a little bit of sun. Someday...
That's why I asked. This disease for however long it took to take our LO's down and the time it's been since they passed has forever changed us. Finding the way to move on is essential to reclaim our lives as difficult as that can be.
Jfkoc, do you spend time with your children and grand-children?
Jules, you are so right about having time now to think about pleasurable things like a mani/pedi. Even though that wasn't something I would treat myself to, I will now. I'm sorry to hear you're still dealing with ailing parents and this disease.
Tay, at least you know you want to be happier and enjoy life. Maybe your current job is just filling a need at the moment and something better will come your way. So, dating right now is not in the picture. How about just re-connecting with friends & family. Meet for lunch and talk. I realized a lot of my connections on my phone were more related to my mom (doctors, lawyer, hospice, etc..) then personal. I'm hoping to make connections again. My sister and I are doing a spa weekend at the end of this week to bond, we need it.
Hanging in there........
While my daughter lives about 10 minutes away I do not spend a lot of time with her. We do talk or see each other probably once a week.
Grandson's come by when they need a bit of gas money or I need them to change the light bulbs.
I talk to my son in St Louis every week and his girls less often.
That seems to be enough for me.....not a lot to talk about with them.
Maybe I should try harder. Hmmmmm
It's been just over 2 years since I lost my mom to this horrible disease and I am still lost. Like others, I have always taken care of everyone in the family. While I took care of my mother in my home 24/7, my boyfriend was also caring for his mom in his home. This disease does create isolation. A year ago, I left my work from home job to go back to work in an office thinking that the socialization would help but it hasn't. I too, use to be a social butterfly in my younger days but not so anymore. I am 54 so not too old yet and am still working on trying to find joy in everyday life. It has been a struggle as care giving became such a big part of my life. My boyfriend and I try to go out to eat every couple of weeks or to a movie. When I am out shopping, I look for things that my mom would like and that brings a smile to my face. I love music and we plan on attending 3 concerts this summer. The beach is also my happy place, so I am going to plan a long overdue vacation somewhere by an ocean. I also remind myself to be thankful for each and every day we are blessed with as tomorrow is not promised. Like our journey through this disease, we need to take it one day at a time.
Sending good thoughts and hugs to all of you,
This journey in caring for our loved ones has forever changed us. As a caregiver to our LO's it was more then meeting their needs. Our love for them especially through this disease was & is endless. As hard as it was to go through so much with them I wouldn't do it differently.
And, that is why it's difficult to find your way, purpose and reason to move on. When being the caregiver is all you know. You need to re-discover you. It's not going to happen over night and from what I see not even after a couple of years. But, it's worth the effort. This journey that we were put on meant something, right? As we continue to navigate through our grief I think they would want us to find our joy.
I hope that as time passes I will find ways to continue to honor both my parents. They were and are my hero's who taught me so much. My family and I are truly blessed to have had them show us what is love.
Here's to all you loving caregivers in finding your joy, smile, laughter and happiness again.
What is this “life after caregiving” you speak of? .
Honestly, that’s all I want...a life.
That is what my dad wanted for me, and my mom too.
I settle for surviving another day.
One day at a time.
There isn’t any vacation time or get away time, time to take care of myself, do the things I want or wanted to do...or moving forward at this point.
It has only been a little over three weeks for me. I feel much calmer, and my hand hardly shakes at all anymore. I'm still deep in the process of clearing out my mother's room and deciding which of her things to give away. I find I procrastinate because the decisions are too much for me just yet. Still in the process also of filing life insurance claims and filing as beneficiary of her remaining assets. I really dragged my feet on that part.
My ultimate hope is to have a little fun with my spouse for what good time remains to us, but the fun hasn't materialized yet.
Time and baby steps towards healing. So hopefully the answer is to not overwhelm ourselves with major tasks or changes that you are not ready for. We need to take it day by day.
I'm trying to work within my circle of friends and family. I'm not ready for branching out into the unknown. Fortunately, I work with a nice group of people. Socializing is the issue as TheirLittleGirl stated. It feels especially awkward when you're not in your own element. For example I went to an annual dinner at my husband's job and boy did I feel like a fish out of water. And, I know his co-workers. Our conversations were always about what this disease was doing to mom and how she was doing. So, you almost don't know what else to talk about. But, with time it has to get better.
Hang in there! The sun will shine again
For you DayN2nite2:
I hope this can make things a bit brighter for you today. Blessings to you.
I've been thinking about Mother's Day, which is coming up in a few short weeks. This is the first year I won't have a mother on Mother's Day. It's really sad. I would not, however, bring Mom back in the way she was.
i feel like what a lot of you have written is on behalf of me!
6. Get out of the house every day spend some of your day getting some exercise.
This Fall will make 7 yrs since Dad passed & 4 since Mom passed. Still trying to settle the family farm division with a hostile sibling, working ALOT - making up for lost time during the CG years, & trying to enjoy "having a life" again.
This whole experience has changed me. I'm much more introverted now. I've changed jobs - my "thinker" was tired, so I left the world of financial planning & am bartending. I like it - for the most part, it's mindless & low stress. When I'm done my shift, I don't have to think about it anymore! Crowds & noise do bother me a bit now, but it's tolerable being behind the bar, slightly removed from it.
I prefer to spend my off-time at home, with my critters. Home is my sanctuary. I get more than enough "socialization" at work, so I enjoy the peace & quiet of home.
I seem to have become the "go-to girl" for all my friends & their concerns about aging parents. While I'm happy to help them if I can, part of me kind of resents it. (Like, "Hey, I've done more than my fair share of time with this crap, & I don't recall any of you being there, holding my hand!") Guess I still have some unresolved anger & frustration, huh?
My emotions are much closer to the surface & I work harder to contain them. Those who haven't been on this journey just don't get it, & I don't have the patience or time to explain.
Wishing y'all luck on stage 8 & sending huge hugs, Twink
I seem to have become the "go-to girl" for all my friends & their concerns about aging parents.
I am new to this side and really appreciate everything you all have written. I identify with so much of it. My mom died twelve days ago. I am still numb and unable to sleep much at night. I have weird dreams about her when I do sleep. It’s weird to be able to leave the house without making arrangements. I still feel like I will go downstairs and she will be sitting on the couch. Because she lived with us for four years her presence is everywhere. I go to the sink, I think of her doing dishes. I sit on the front porch, I think of us sitting there together. The day after her funeral I sat outside the whole day bc I could not be in the house.
I have also been a caregiver to my parents the last 15 years, before that a stay at home Mom to my 4 little ones. My kids all still need me but they are all teens now so my role is different. Anyway I am struggling with the shock/trauma of watching my mom die, the sadness, the emptiness and just feeling like a fish out of water in the world and especially in
social situations. I’m so used to things being so heavy and serious that talking about new diets, fashion, vacations, where to get nails done is not something I can relate to right now. . People will be talking and in my head I’m thinking, “ I just watched my mom slowly die from Alzheimer’s and I don’t really care about these things”.
I know things will get better. My mom and dad would want me to have a wonderful life. I think it’s just going to be survival for now bc it’s all so fresh. First thing is to focus on getting sleep bc I think that will help my mental state. Did any of you have trouble sleeping? What did you do for your sleep problems?
Thanks to everyone that post on this side bc I really need help navigating this stage.
I know exactly what you're talking about. You are just a couple of weeks in and the fog will continue. To be honest I thought after my mom passed I would finally sleep through the night, but not so. I slept worse then ever. I would wake up multiple times and look at the clock to see the time. I don't know why. I think no matter how much you tell yourself that they are in a better place the grief is overwhelming and you're still processing it all.
It's been four months for me and it took a bad cold recently for me to sleep. I think I was so miserable with the cold that I just didn't think about anything else. Crazy, huh?
Maybe try a lavender soak, tea, melatonin, or an over the counter sleep aid. The biggest part which will take time is accepting that your mom is no longer physically with you. She is always with you.......in your heart and she is a part of you.
I hope with time you will be able to sleep better
Life after caregiving....I'm only in the first week after losing my mom, so I don't quite know what that is yet. I feel like I'm still in caregiving mode, as I continue to handle her affairs and am in the process of finalizing things.
Although I have been able to focus on handling those matters that are related to the passing of a loved one, I'm in a fog. I'm forgetful, unfocused, and tired. How is it that before Mom passed away, I worked full time, took college courses, managed or had a hand in all Mom's care needs, visited her five to seven days a week, and did other things in between, yet now I'm in a total fog?
I had the week off work, and will return on Monday. This, of course, will be part of my routine and continue to fill the slot in my life it always has. I have had little to no time for pursuing hobbies. My house and yard show signs of great neglect. Right now I feel so tired and am lacking the energy to do much, but my husband and I did fill the time today we would normally spend with Mom, by working on our garden.
Sleep has not been my friend. I started taking melatonin, and it seems to be helping me get some sleep at night.
Life after caregiving. I don't know what that is yet, exactly. My mom died mid-June. Before that was my mom and dad as far as caregiving, so it was full-time thinking of their needs along with the hands-on care involved for both of them, or the organizing of caregivers, or the transporting to and from the club my mom attended, or the medical appointments, or the concerns about their habits and new behaviors, the endless phone calls to me at my job, the time off to attend to their needs. My grown children thankfully are responsible adults without me helping them too much.
The only thing that has saved me is that two weeks prior to my mom dying, we adopted a full grown rescue dog. Everyone told me that was the last thing we needed was more responsibility as my mom was already in pain and dying at the time we adopted this sweet girl. This lonely dog from the shelter, with her wagging tail and her smile and her wiggling has truly saved me from desolation and despair. Four walks outside a day. Brushing. She is a delight and a joy.
My mom, who didn't normally like dogs, even liked her. My daughter is totally in love with her. Maybe on some level my mom knew that this dog would rescue me, because yes, me and my mom, we were so close and it is so hard to think of life without her even though I know she was suffering and that life will go on. It is easier to see when the reminders are right there that life goes on, and trying to embrace that reality and let the past subside. I know it will. I will learn to focus on the present. It's just taking time right now to process the past.
MP Sunshine, great to see you on the boards again!
Wendy, I got through the first year by being incredibly busy handling the estate. More jobs, more things to focus on. But then I almost felt like I had PTSD, and in some ways still do. Being the primary caregiver for this disease certainly changes your life. Before, during and after.
Now, I'm still trying to get back to a new normal living. Spending time with grandkids, cleaning up a house that was neglected for years, trying to look ahead. And hoping this disease is not in my future.
My mother passed on June 6th so my
wounds are still pretty fresh. I find myself sitting at work and randomly
breaking down out of nowhere. I have to get up and go outside to try and work
through it. I’m exhausted every day from
being so emotional and my horrible sleeping patterns aren’t helping (and that’s
while using a sleeping aid). I have 6
other siblings and every one of us is grieving; and in so many different ways
as everyone does. This is the hardest thing we’ve all ever been through and
none of us know how to handle it. When I get home much of the same; I break
down out of nowhere uncontrollably. My poor husband has no idea what to do when
I get like this. I actually feel bad for
him but what can I do? It feels like the world just kept on going after mom died but I’m still
stuck on June 6th, holding her hand right after she died. I can’t catch up to life and I wish it would
just slow down for me. I know it’s early
but I wish I could move on….even just a little.
Thanks for hearing me out.
Skittles412, I feel your pain even though it has been 31 years since my mama passed. I was beyond devastated and like you, my poor husband was at a loss. All I can tell you is it will get easier, not today , not tomorrow, but over time the pain won't be as sharp, BUT you will always feel the loss no matter how much time goes by. You only have one mother and it is so hard to tell her goodbye.
Blessings and prayers for you to make peace with your loss soon.
Thank you for the kind words ViviLynn. I could never have anticipated how I'm feeling since mom left us. This is a blow to the stomach that may never heal. I can't wait till my memories don't make me cry.
I wish you peace Vivi.
My mom passed away 8 mos ago, right before the holidays. For the last 25 years in some way shape or form I had been caring for someone. The last 8 years it was my mom and later added my eldest son a marine, sustained a TBI while in country.
I had been her primary caregiver through the entire journey. I was exhausted both physically and mentally when she passed. I was not able to do anything at all, it was just too hard and ended up taking a leave of absence from work.
My world was turned upside down both during the journey and with her passing. It’s hard no matter what. The hole remains, but I’m learning to live with the hole and emptiness. Tears still flow.
The journey was long and grieving started before she passed. Grieving and recovery have no time frame,
We gave everything we had and for me, I am trying to be kind and gentle as I find peace afterwards. I never expected stage 8 to be this hard.
Hugs to everyone
My heart goes out to you. This stage isn't any easier then what we were going through with our mom's. The only thing is that they are at peace and no longer suffering with this disease.
Navigating our new normal will take time. So, don't expect everything to be ok everyday. It's been 6 months for me and a piece of me is gone. Of course she is forever in my heart and I try not to dwell on all the sadness. I purposely don't think about the bad parts and focus on the good.
Connecting with others on this side has helped me cope with the grieving aspect.
Just take it one day at a time. Don't make any big decisions and find what brings you joy again.
Your right grief has no timeline. And, we have been grieving since the disease started. Now, we have to adjust to our new normal and that will take time.
I'm sorry to hear about your son. How is he?
It is one day at a time. And, the tears still flow, but at least we know they are no longer in pain.
It's been almost 14 months since I lost my sweet sister, Deb; 8 years since Dad left us & I did a lot to help care for him and Deb at the same time for a few years; Mom has been gone 15 years on July 19. I don't even know where I am anymore. Deb's pictures are all over our house. Though I've gotten rid of a lot of her things, I still haven't finished cleaning out Deb's room at our house.
Feels like after 14 years of caregiving (7 of which were with Dad (who had Parkinson's) and Deb), I'm wiped out. Having Rheumatoid Arthritis has been no picnic with this. I let things go for so long, it's attacking like a vengeance. In April I had to get a reverse total shoulder replacement to my right shoulder because the RA has been attacking my tendons, too. My left shoulder isn't a lot better, & I ruptured my left bicep tendon when Deb was on a slow decline & never had it fixed, so that makes for a bad combination. My feet are completely eaten up with it, and my ankles have RA damage so bad I'm about at the stage of needing the right one fused. I'm still trying to work with all this going on. It's a real battle. I've got no energy in me. I'm only up at this time from pain.
Why is it that when we're in the hectic state of going through all the years of caregiving, we've got support - like we had on the Caregiver Board - and then once our LO is gone, poof. Everyone thinks we should go back to our own lives & all is wonderful. I don't even talk to my friends about things anymore. Many of them still have a lot of their family - some still have their parents. All I have left from my original family is my brother - and we barely speak. For me that's good because he'd been so verbally abusive for so many years, I don't need to put up with that anymore.
Right now we're watching my husband's parents (both 87) declining & they need so much help but absolutely refuse most of it. Both have memory issues, as well as many physical ailments. We keep an eye on them, as best as they'll let us, but that's a mess. It just doesn't seem to stop. Many days, like today, I wonder how much life is left in me. All I seem to have is pain.
I’m so sorry Pam. You’ve been through so much. You might benefit from counseling to help get through some of your emotions. I understand what you mean about once your LO is gone so is the support. I sincerely hope you find solace in your mind and comfort during your physical pain. God bless you....