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Hi all:
I recently posted that I was the primary caregiver for my 94-year mother for 10 years (during which time her health declined). I helped her age in her apartment until 2 weeks ago when she finally moved to a retirement home in another city (5 minutes from my sister’s place). I am relieved to have relinquished the role of caregiver, and am now free to move forward with my retirement/life.
I now see my sister dealing with the weight of our mom’s issues, and can only offer limited support. I live 1.5 to 2 hours away—this is actually a very good thing as lack of proximity prevents me from stepping back into the quicksand of caregiving. There is a gravitational pull when you live in the same city as an aging parent that has ceased since she moved away.
I’m glad to be free again after 10 years: it comes with guilt, however. I am wondering if anyone can offer thoughts on how to best navigate these early days of post primary-caregiver life.

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You have been here a while, Danielle, so I know you already know my old things about guilt. It requires causation, meaning that you must have done something WRONG on purpose and been unwilling to attempt to correct that wrong out of evil intent.
That isn't you. So guilt's off the table.
I would try on for size that other G-word which is grief.
You didn't cause your mom's aging problems and you can't fix them and you have done much to try to lessen them. Now you are suffering for your sister and what she is going through. Proof enough for me that you are a pretty decent person. At least in my JUDGEMENT (or opinions which sounds ever so much nicer but means the same).

I think I would express to your sis how you feel, let her know how close to the surface your own nerve endings remain from all the caregiving, let her know you known how tough it is, ask what you can do other than letting her know she has your deepest thoughts.

In some ways you are free but still have two wheels stuck in the mire, if you know what I mean.
I sure wish you the best, and just know that for BOTH of you this is going to be quite an adjustment; be easy on yourselves.
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Danielle123 Nov 22, 2024
I’ve been visiting Mom 1-2 times weekly. I’m already finding that x2 weekly is too much. With winter weather, it will settle into x1 a week. I also call frequently.

I know exactly what you mean about being free, but still feeling emotionally mired. It has only been two weeks since she moved, and I’m adjusting to this change.

I am taking a trip in December to visit friends. I need a vacation. Thank you, AlvaDeer, for your insight.
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There is grieving when you handover the hands on caregiving to a facility .

You are also feeling empathy for your sister now since she feels the weight more now .

Mom is where she needs to be , you do the best you can , that’s all you can do . You’ve already done a lot .

I don’t have alot of advice about navigating this . It’s an adjustment since your role has changed . I suggest setting some routines for yourself . So much of your life was wrapped around a caregiving routine . You need to relearn to live your own daily life.
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Danielle123 Nov 22, 2024
waytomisery, Mom is definitely where she needs to be.

I’m not sorry that she moved: it’s liberating. I think that seeing my sister struggle with the added weight of Mom’s care has been triggering the guilt for me. I need to accept that I can only offer limited support, and that things are now in a different place.
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After 10 long years of caregiving, isn't it someone else's turn to care for mom now? Realistically? Was your sister feeling guilty for those 10 years you were stuck doing all that caregiving? You didn't throw mom out on the street, so you have nothing to feel guilty about. Start thinking with your head now and not your heart. Have fun and enjoy your newfound freedom by doing NOTHING but sleeping late for awhile and scratching your belly! Stay in your houseboat and watch some extra dumb shows on TV too. You've earned the right.
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Danielle123 Nov 22, 2024
That’s a really good point. I don’t think that she felt any guilt when I felt so stuck in that role for so long. Thank you, lealonnie1. Yes. You are correct: time to start thinking with my head.
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This is from a person that always felt guilty. Loved Mom but of her 4 kids she knew she could get me to do for her because I suffered from guilt. Mom passed away in 2014. I really was an only child in caring for her. My brothers did nothing, not even to ask. As POA, I had all the responsibility and made all the decisions. Patience is not one of my virtues. As the oldest and a girl my parents always turned to me and that was Ok. I am sure I made mistakes caring for Mom, but I refuse to feel guilty that I may have fallen short. Because...I was there. I was her advocate and maybe at times selfish but I was there. I cared for herb in my home for almost 2 years. Caregiving is not my gift and my daughter is an RN. Mom was placed in an AL and LTC later snd adjusted very well. I think she was better in both because she was always kept in the common area where the activity was. She liked people. Guilt is self-imposed. You did enough. Mom is now safe and cared for. You can now visit as Mom and daughter.
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I'm not going to tell you not to feel guilty because I can understand how you feel as I'm dealing with a similar situation. I've been my brother's primary care giver and POA for the last 10 years with him living with me 7 out of those 10. The last year was because he was paralyzed during a surgery. It was 24/7 care. Hospitals, doctors, home IV antibiotics, pressure wound care, helping him in/out of his bed/wheelchair. I eventually had no choice but to place him in a LTC facility because I physically couldn't move him anymore because he'd lost all body strength. He passed away 3 weeks later. I'm dealing with I guess it could be called survivor's guilt. He has other family, but none in the area and none that were able to care for him. Now I'm dealing with his final arrangements, etc. I feel guilty that I didn't do more for him, which according to everyone around me is stupid because I did everything humanly possible.

When we take on the role of caregiver, it's a huge responsibility that other people just don't understand unless they've done it. I can't sit and watch a movie without having an anxiety attack because I'm not doing anything. It's one of those things that will just take time. All we can do is draw comfort from the fact that we know we did everything we could during that time, especially knowing there were others that probably could have helped. Talk to a therapist if you feel the need; it's helped me a lot. Ten years was a huge chunk of time we devoted to our loved ones. It will take some getting used to. Just be sure to take some time to devote to yourself now; you've earned it.
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Navigating guilt is a complex emotional journey, and it’s important to recognize that you are not alone in this experience. Seeking understanding and finding ways to be supportive, even from a distance, can help ease feelings of guilt while still caring for your own well-being.
maybe you can provide a little other support- emotional support to your sibling - a caring call to see how she is- she may just want to sound off/let off steam/frustrations
monitor your sister and have dialogue- if she really can’t cope the. Seek alternative solution fir your mother
maybe start at doctors for advice
in the meantime acknowledge the efforts and sacrifices you made during your care years and be mindful of to yourself. You have nothing to feel guilty about.
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You deserved a break. You took care of your mom for 10 years. Please don't feel guilty. Enjoy the freedom because life is short.
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My advice is to get back to doing the things you like to do. And have no regrets.
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Reply to Sample
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I have guilt everyday - I did caregiving for my grandma, mama, daddy, brother, sister before they passed away. Could I have done anything different than what I did - no not with the knowledge I had back then. I pray everyday for that guilt to be lessened so I can continue with my day. I am reminded that I did my best and it was what it was and the past cannot be changed - we can make it easier on us and our family from what we have learned. I told my daughter if she sees any signs of my mama and daddy in me as I get older please please please do A, B, and C. She has agreed and I have a living trust, will and everything that is in order so it is easy for her to find and deal with. She knows how to get into my emails, bill paying and accounts so everything will be easy for her.
The guilt never goes away but it is lessened by the things we can do.
((hugs))
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Reply to Ohwow323
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It isn’t your fault and you haven’t done anything wrong, but it is a huge change that you may not be able to just bounce back from. I would suggest to start by going to therapy. Ugh it sounds so cheesy, I know, but therapy has helped me so much on more than one occasion, I cannot recommend it enough. It also gets your mind tracking to doing something for yourself because it requires making an appointment and showing up for it and that small thing may have been difficult during your time as a caregiver because you always had to consider other people and their needs. Oh and go get your hair done, even if it’s just a blowout. Looking good will make you feel good <3
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Reply to Jen418
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You did this for ten years. You did the most noble and honorable caregiving that any parent could wish for. Most of us are caregivers from the heart and are dedicated.

Eventually, a parent or loved one will require a higher level of care. It is inevitable in this aging journey and doesn't have anything to do with our ability for caregiving. It just is and there is no reason to feel guilty.

I think the guilt for a lot of us is a new found freedom and time that we forgot how to fill. We need to learn life again.
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These feelings are NEVER easy to deal with - no matter how much we give, which is often 110%.

From my personal experience, this is how I handle(d) feelings of guilt, overwhelm, exhaustion --- all wrapped up into one emotional bundle.

* FEEL it. Whatever you are feeling, go deeper into it.
- Do not push feelings away as they are giving you (needed, emotional) information for your healing benefit.
- Pushing away makes them stronger.

* INCORPORATE MEDITATION into your daily life - even 10 m a day can / will make a difference. Google Rick Hanson ... Join us Wed nights Zoom 6pm for his amazing meditation and dharma talk. He is a neuro-psychologist (brain plasticity) and Buddhist scholar. He wrote Buddha Brain, Just One Thought - and many other books. A really good man.

* UNDERSTAND what's behind the guilt(y feelings).
- Understanding is a process of self-inner-exploration. Write down what you believe / feel is behind/underneath the feelings (guilt). Explore them as much as you can. For example ... (my experience / process):

I did xxx for 6 years. I did 200% for him. He knew that. He thanked me just about every time I visited. When he died, I felt GUILTY how I treated him years before that ... the 18-20 years I knew Jerry. It was a very difficult relationship due to his PTSD. He loved me like a partner; I cared for him more like a mother protecting her child. I reacted ... frustrated ... screamed ... got angry ... BECAUSE I DID NOT UNDERSTAND THE DEPTH OF HIS PTSD.

* I focus(ed) on all that I did.
- That I did the best I absolutely could have done
- That Jerry realized that I was 100% there for him, for years.

I remember his words to me "I want you to take care of yourself."
He wanted the absolute best for me ... and that means SELF-FORGIVENESS and SELF-ACKNOWLEDGMENT for all that I did ... for years, when exhausted and overwhelmed.

I read that it self-care requires us to:
1. Be aware of how we feel about our self in relation to another, i.e.,
2. When a guilt thought comes, Immediately think of a 'good time' or a 'good deed' that you did to counter-the guilt reaction. Train yourself to automatically SEE and FEEL the good you did / do.

Learn that self-forgiveness IS self-care.
You want to take care of yourself.

Do good things for yourself.
It starts with how you think, then how you behave/what you do.

Gena / Touch Matters
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I just want you to know you're normal. When my husband went into a care center I had all sorts of emotions and started searching for resources. I found this helpful Swedish study: Breaking Up and a New Beginning When One’s Partner Goes into a Nursing Home: An Interview Study

Obviously it's not a perfect fit to your experience, but the bottom line is that it is normal to feel some basic strong emotions in a situation like this: grief and guilt, and a sense of freedom. Grief/guilt because of what we did or didn't do, and freedom because now we have much more of it again.

Here's a link to the study if you're interested. It's quite lengthy, but the abstract at the beginning does summarize well. https://pmc.ncbi.nlm.nih.gov/articles/PMC8226602/
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Reply to Zookie
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Danielle123: Please know that you did a stellar caregiving job for a DECADE. Thank you.
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Reply to Llamalover47
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Remind yourself of what you accomplished - 10 years, allowing mom to remain "at home", giving of yourself so she could thrive... - whenever the feeling of guilt comes along. Then, think of what you need to do for yourself now - focus on your health needs, develop/maintain healthy relationships that nurture you, develop or investigate activities that nurture your soul. Do those "things."

Since you are not the primary caregiver to your mom anymore, think of how you can support your sister in this new role she has. Give a little love, time, or help that does not lead you to getting burned out.
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Reply to Taarna
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Remind yourself that you did the heavy lifting for 10 full years and now your sister is doing it. Considering your mom's age, your sister will do that for much fewer years so that will take care of any guilty feelings that your sister is now the caregiver. Feelings of guilt with our parents are normal, but just remind yourself "I took loving care of her for 10 years and now my sister is caring for her lovingly. She is being well cared for. I did a great job." If you tell yourself that every time you have guilty feelings, eventually you'll truly accept and believe that you did an awesome job. And now you can start your life without the burden (and it is a burden even when we love them) of caregiving.
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Hi,
Bless you! I can identify. I cared for my dad for over 20 years after my mom died. He just moved to a facility 6 months ago. I felt guilty for a long time and still do at times. I will share something that my therapist told me: She said there is a difference in feeling guilty and being guilty. I had never thought of it this way. You did everything you could for your mom for 10 years so you are not guilty but because we are humans we often feel guilty for no reason. It is hard but just try to keep reminding yourself of all that you did for your mom. That is what I do. I know I did all I could until it became too much for me and he needed 24 hour care.
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Reply to faithfulbeauty
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Danielle, I think it’s pretty great the way you and your sister have tag-teamed your mom’s care. From what I’ve read here, it rarely works that way and there are huge problems with unmet expectations between siblings that can rip families apart. Sure, it’s going to be hard for your sister - it was hard for you as well.

I can’t really give you advice other than to remind you that if you were not a loving daughter and sister you would be doing backflips of joy right now. The conflicted feelings you’re having are completely normal and healthy for one who cares.
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Reply to Peasuep
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Quicksand…perfect analogy. You have earned the contentment of retirement. (And then some) Sleep well, have fun, breathe
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We often offer grace to others, now offer that same grace to yourself!
My definition of grace is your own consciousness giving yourself approval to be content and happy in any given situation!
May you and your family be blessed💕
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Reply to Endure
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Your first step to dealing with the guilt has already been accomplished. You posted here to share with others. Too many people try to handle things on their own when they don't have to.

My wife and I took care of her mother for 27 years. The last 2 years has seen a significant decline due to Alzheimer's. It became too difficult to continue to care for her and take care of ourselves. We put her in a long-term care facility with a memory unit even though we said we would never do that. For my wife she has never done anything more difficult in her life (except maybe dealing with me LOL). Once my wife saw that her mom adjusted well to having others around her like her, my wife was able to start letting go. It takes time. Sharing what you are feeling with others helps considerably.

Keep focusing on yourself and keep sharing. The guilt WILL lessen. May your future be blessed with peace.
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caring is hard you need off periods hire someone so you go away I had severe sickness coz of caring and weakness. I have suffered 4 weeks one week of poonamis and weakness. My MUMS spouse harrassed me coz he needed a hand. He refused 2 pay for anyt care and he has money. I am moving on. Enough.
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mnghj1111 Dec 7, 2024
super human....NO
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