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I started coming to this forum back in 2012/2013 when my Dad started having dementia symptoms. Through the years I have cared for both parents on different levels .. first my Dad, then my Mom and Dad. Mom also has dementia and my Dad passed last year.


Through my caregiving journey, I have changed.. pre caregiving relationships have all been damaged.. or I became aware of how shallow they really were. When my Dad died my MIA siblings came and professed their undying love for him, blamed me for the condition of both mom and Dad, and harassed me the week my Dad was passing. I had no one to comfort me.


So my Mom is still around but she is in a memory care. Its been since March since I have seen her because of Covid. I’m still technically a caregiver but I now have more time and am looking at trying to re build my life. The one part of my life that has stayed intact is my work. I have a good job and make a good salary so thankfully money isn’t an issue.


I have a therapist and am a member of 2 caregiver support group. No one in either groups seems to have really lost themselves as I have. Both of those groups dont seem to have anyone who can understand losing pretty much all of your relationships.. especially with relatives.. as what has happened to me. I fear that I just dont know how to get over the trauma of being a caregiver and live in peace.


Anyone understand my dilemma … or is struggling with the same thing? Any insight on how I can continue with my life? How do I connect with others now? How do I live in peace after the trauma of dealing with my parents ? Its like I have lost my own personal identity.

I totally understand how you feel.  It's like going to war and coming home and everyone saying....the war is over, why aren't you happy go lucky?  You have experienced a long term trauma and heartache and it has changed you.  For me, looking at my mom with dementia and thinking that could be me one day has scared the hell out of me.  I don't want to be like that, I don't want my only child to have to take care of me if I am like that.  I do feel a sense of "alone-ness" and I feel changed.  There is a certain level of anger as well regarding those family members who aren't involved at all and call her once a year...maybe, who think they have a right to say what they think she needs or how something should be done differently than how you're doing it and they don't have a clue because they have never handled anything like it before.  I don't know about you but I am at a point where I don't really care if those people are involved in my life or not.  It is a trauma to the heart and mind when you deal with it year after year and you will definitely have a "new normal" on the other side of this. 

I haven't seen mom since the covid lockdown at her assisted living facility.  I told her the other day that I didn't miss searching for her clothes so that I could wash them....she just laughed. 

I believe that time helps with most pain...don't you?  Start doing little things for yourself.  It will take time for you to start thinking about yourself again.  I think you will be just fine katiekay...just give it some time.
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Reply to Jamesj
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I think you have to re-create yourself, which is what I told my cousin who had lost herself entirely after caring for her aged parents for years. Create new friendships with people you choose, instead of those relatives who you're forced to 'care about' who could care less about YOU. Friends are the family of choice. Join a church or a hobby group, take a class, join a gym, start a neighborhood dinner club, join a book club.......in other words, force a new life UPON yourself because it won't happen otherwise.

Caring for my parents as an only child since they moved here in 2011 has been quite an ordeal, as you can imagine. My father passed away in 2015 but my mother is going strong at 93+ and living in Memory Care Assisted Living. My cousins used to call to harass me about what I wasn't doing or whatever, until a couple of months ago when I made my political views LOUD & CLEAR, and then I never received another call! Yay! Guess what? I do not WANT these cousins in my life if all they have to offer me is more negativity than I already get from my mother. I expect nothing from anyone and so I'm never disappointed. I do what I can and I rely on my husband to help me, emotionally as well as physically. He's done all the many many moves associated with my folks, as well as 1 phone call per week plus he goes along with visits to my mother's every single time and acts as my buffer. When my mother finally passes away, I will be able to say that I did everything possible for her while she was alive, and then I will be free to live MY life exactly as I see fit. Without worry, guilt, fear of the phone ringing with more bad news, etc.

Create your new life, my friend, as YOU envision it to be. Let nothing and nobody stand in your way as you work toward achieving that goal. Put one foot in front of the other and take baby steps. One day at a time, one step at a time, you WILL recreate your own personal identity that way. It's never too late & you're never too old to do that!

Good luck!
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Donkeygirl Jun 23, 2020
Thank you for your post. It is nearly impossible for others to understand these things. Your situation sounds as close to mine as I've found. As an only child w/o any other close relatives, I have been using the expression "I have lost myself." The journey of the last 2+ years has been the most stressful ever, mostly due to my dad's illness. He recently passed and now I am trying to help mom who has chosen to live at home as long as possible. I am honoring that wish but it increases my stress and worry. And she is trying to cope with her loss of her partner of 71 years.She will not let strangers come do anything for her. My husband too has been so supportive. My only close friend moved away last year and so now there is no one who gets it. It's like someone said, they think that since dad has passed some things are "over." Others try to say things, but they cannot understand since they have chosen a life of no responsibility to parents. How do you move on under these conditions? We aren't able to do any of the things others our age are doing. I love my mom and am dedicated to doing anything I can for her. It is so difficult most of the time. Thanks for sharing.
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Ahhh, Katie, you and I came here about the same time. I cared for mom and L 24/7 for four years. I hear you. I have had to let twisted sissies and auntie dearest go, their suspicions of my motives and ridicule, vindictiveness, spite and greediness did me in. And that is ok with me. It is just too hard to be with any of them when they just have no clue.

Mom passed in 2017, the nicest thing any of them ever said to me was that Christmas when ts2 said to me that mom would have been better off at home. It might have been an effort to make me feel guilty, but I have chosen to believe that she finally realized all that I told her about mom and her behaviors was in fact the truth. I will never know and maybe I don't want to.

You have done very well through it all. Now it is time for you and you alone. Think about book clubs at your library unless they happen to be reading something about dementia or caregiving. What about a bridge club or mahjong? Something completely away from caregiving. There are so many opportunities to volunteer. Refurbish that old train at the museum? Yes that actually is one opportunity that I have heard. Caregiver support group will not cut it. I am not saying give it up but don't make that the only group you participate in.

I could read much of this to myself, I could do better. But the four years was completely exhausting and I have needed just time, space and quiet for me. I had to completely reinvent myself, finding work after caregiving was very difficult. I had to leave my home state and all that I knew to work again. Now I am back in my home state and grateful.

Best wishes to you and just be patient with yourself.
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katiekay Jun 21, 2020
Thanks Glad! I remember you from way back. I do enjoy the quiet and find peace in that. There is still the judgement from my sisters and others .. but I have basically cut them out of my life. You are probably right that the caregiving groups aren't really giving me what I need and I do need to branch out to some other hobbies and volunteer work.
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Katiekay, you may not think so, and no one has used the word, but you are GRIEVING the loss of your dad, your mom's current situation and the loss of relationships with your relatives. I hope your therapist has experience in grief counseling. The suggestions below about creating a "new you" are all right on. It's a decision you have to make to get thru your grief. They say that "time heals all", but that's only half true. The other half is commiting to action and doing some difficult things that will get you through this struggle. Reinvesting in life is a process. Your therapy sessions and support groups are part of that process, but those are passive activities, the rest of your journey requires the actions others have suggested below; volunteer, find a hobby, create a relationship with someone in your support group, etc., etc. What will define your life? What will be your "new normal"? The actions you take will answer that question.

Good luck. A great future lies ahead for you.
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KatieKay!

I am so thankful for your post! My good friend and I just had this same discussion. We feel like we have completely lost "ourselves" during this caregiving journey. It is a strange feeling to describe...and we have not been caregiving for 10 years like yourself! It's interesting... and I am working through forgiveness on this...that the very relatives you think a will help you in a crisis...disappear! My friend and I are both only children. It can be so lonely. I don't have any answers, but I am trying to make lists of things that being me joy. I am starting with little things (like my caramel flavored coffee, a scented shower gel, etc..). I am still caregiving, but I am having to totally rediscover myself. I pray that you are flooded with God's wisdom, insight, clarity and peace. Thank you so much for your post.
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katiekay Jun 22, 2020
I'm glad you got something out of my post SunnyDaze! Yes.. caregiving can be very lonely but it does force you to really look at your relationships and yourself. I do hope I can make other connections and relationships but I think the most important thing is loving yourself and forgiveness.. as it seems like you are focusing on as well.

Every little thing you can do for yourself is great.. yum.. caramel flavored coffee sounds good.
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The caregivers in your support groups might not have been in this journey long enough to realize that the relationships they have with friends, neighbors, relatives WILL change.
Friends stop calling to ask if you want to get together for coffee or lunch because you always say you have to take care of "XXXX"
People in general are living their lives and "forget" to call and ask how you are doing, ask if there is anything they can do.
Call a friend and ask if they want to get together. You need to start being the one to take that step.
As for the people in your support group...Give one of them a call and ask if they want you to stop by with some coffee or tea. And just mention you are going to stop at the store and is there anything you need.
How many times when you were caring for mom or dad at home and you needed something but couldn't get out?
People all say.."If there is anything I can do to help let me know"..but we never say...I could use some company could you stop by around 1, mom is napping then I could use a cup of tea. And would you mind stopping at the store I need a gallon of milk and some eggs. People want to help they just don't know what to do.
Share this with your support groups. Share what you have learned. If you have found a better way to change a sheet with someone in bed, share that. If you have found a way to get mom to take a shower..share that. If you found a better "solution" for constipation share that. If you found a better way to do anything share. The knowledge you have learned is valuable it might help someone that is having the same problem.
Everyone is at a different spot in the journey as caregivers the problem one faced a week ago will be one that someone will face in a month. They will remember what you say.

Your personal identity HAS changed. Because YOU have changed. You are better for what you have learned. No one is the same person they were 25 years ago, or 5 years ago as we mature that wisdom that we have is so valuable, use it to your advantage.
Call a friend you have not talked to in a while and go get a cup of coffee or tea...(maybe an Irish Coffee..or a Long Island Iced Tea....)
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Make new friends. Not easy after 50, but not impossible. When I retire I am going to check out the red hat ladies, their only goal is to be social. Maybe join a new church or parish. Take a class. Just meet new people, that are NOT caregivers, or relatives. It is time for a reset my friend.
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I completely understand your dilemma and also took care of my father when he was diagnosed with cancer and died almost a year ago. My mother has numerous health problems is in assisted-living and now has a great deal of cognitive decline. I’ve helped him continuously on and off for the last 20 some years and got to a point of burn out. I am only beginning to put my life together only because I’ve enforced boundaries and handed over responsibilities to brother. I’ve known for quite some time something was missing in my life. I strongly recommend reading a book titled will I ever be good enough by Karyl McBride. I’ve also asked my therapist to read it and we discussed the book as it relates to my life. It has been extremely enlightening in so many ways. I finally realize that if I don’t take care of me no one else will as I am not married. Be strong and advocate for yourself. The support group on this forum has been absolutely wonderful in a lot of ways.
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katiekay Jun 21, 2020
Thanks for the reply! I will check that book out!. I am learning to love myself and advocate for myself. When caregiving it seems like it is easy to disappear and everything you do is for someone else's benefit so it really takes some thought to advocate for me.. and do things that make me happy.
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Seems that the relationships with both your parents consumed the "relationship part" and the "fun part" of your life. Now that you have more "relationship time" and "fun time," you are realizing that parents are not enough and you need more. Consider who you are apart from caregiving. Delve into activities and hobbies you had to put aside. Find groups online that deal with those long-denied passions. Also, consider reaching out to those people from the past. Let them know that your caregiving consumed most of your relationship time and that you would like to rekindle your friendship. You may be surprised at friendly responses from others.
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My heart goes out to you. You’ve had a double whammy dealing with both your parents. I’ve only had to deal with one. I won’t suggest any possible remedy but I can share what I did that has worked for me.

I moved my mother in with me so I could oversee her care personally.

By doing so, I can see how she really is not how she thinks she is or lies to me about how she wants me to think she is. I don’t have to spend my time traveling back and forth to her house.

I work closely with her doctor and have gotten her on medication that manages her so she doesn’t have so many peaks and valleys of moods, nastiness, combativeness.

I hired a caregiver from Home Instead to come in three mornings a week to take her out in the fresh air for a walk or a drive, cleans my mother’s rooms, gets mom to laugh, play a game, etc. Things she refused to let me help her with. These days I enjoy my time with her out of the house, the TV turned off, or my husband and I go somewhere together.

I took the suggestions of my therapist and after realizing my mother was being manipulative, passive-aggressive and confabulating too, (depending which phase of her CHF/dementia she was in) I reinvented myself.

I do what is best for her whether she likes it or not. I am legally responsible for her. I stopped feeling guilty for anything she threw at me! The childhood I had, she doesn’t remember so why do I have to. She lived in a false reality. A utopia. I don’t know where that home was she lived in but it wasn’t the same one I grew up in. She remembers my three older sibs’ childhoods where she cooked great dinners and made hot chocolate when they came home from school yadda yadda yadda. There is a long gap between them and me so she went to work when I was 9 and I came home to a cold empty house. A latchkey kid. I didn’t mind because I didn’t know any different. It’s like my sibs grew up with Ozzie and Harriet lol. NOT! My father was a narcissist and their childhoods weren’t happy. We all walked on eggshells.

Anyway, I realized if she couldn’t remember the reality why did I have to. So I’ve taken her care on as a job —not a personal responsibility. I’m seeing to her care. I’ve renovated my second floor into a nice apartment and installed a stair lift, I leave her to her TV, she has her cat, her space is cleaned by a caregiver, I administer her meds three times a day, wash her clothes, and make her a well-balanced dinner everyday (she eats her sweet rolls, ice cream, cereal or half a sandwich the rest of the day).

I don’t socialize with her any more than I have to since she’s made it clear she needs nothing from me as her caregiver. My sewing room is across the hall next to her bathroom but she doesn’t care to stop in when I’m in there.

Her CHF is end stage so the dementia is also progressing. She tells people on the phone she’s very happy in her “ivory tower”. But who really knows?

So my life goes on. My husband and I have done all we can to keep an eye on her and keep her safe and healthy. I renovated her home and have just leased it which will pay for her home care.

I retired three years ago at the onset of her CHF diagnosis (and with burnout myself from my job) when I had to move in with her so she could take the medication required for her to be in hospice care and stayed with her for three months. But the medication gave her a boost and she has a had a couple good years until a year ago when her health started to decline again.

This went long and I apologize but ... my point is I stepped out of the box her care put me in, if that makes any sense. I took her too literally thinking her (false) reality was mine. And it wasn’t and it isn’t now and doesn’t have to be. I have an old lady that lives under my care but I also have a life with my husband. She still throws some problems at me but most I can resolve by “taking care of business and doing my job” not worrying if she will like it or not because she can’t be reasonable anymore anyway.
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gdaughter Jun 23, 2020
Didn't expect to but really appreciate all you have shared here. My mom is not on any medication and I have not really given it a whole lot of thought at this point. She doesn't take/wouldn't be cooperative every day as evidenced by her only med, 1/2 a BP pill. But her eating habits leave much to be desire and I too, make one good meal a day and she and dad get their typical breakfast and then the day is spent reading or she will be eating...it can be fruit or olives (the other day she demolished 2 lbs of cherries with no ill effects) or pastry. Why get upset? We've experimented with in-home help and it was a dismal failure as she is rejecting of it. Hoping to try again if I ever feel comfortable about inviting the risk in due to COVID.
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