I’m not sure who I am writing to in this post. I just wanted to say how this website has gotten me through for the last few years.

The peace I thought I’d have isn’t there. The quiet I thought I would enjoy isn’t here. I feel as if I’m in a mourning of something different than when my dad died. I know I did a good job. I was there when everyone else left. I felt no one could have done better than I did. I felt wonderful the look my dad gave me in the end of knowing I was there and caring for him.

Mom passed away so peacefully in my home. Only regret is I could have said goodbye. She had a stroke and was unable to communicate. I have been cleaning mom’s room out and there is no goodbye love letter to me. There are only evidences of how I was not close to her. I found from a long list she had made of things she had done in her life. So very many were new to me. Why in all my time as her daughter she hadn’t told me these things? My name is only written in mostly instructions for taking care of her affairs when it’s time. My sister and brother are in the fun times and I got this. Yep, I know I’m not the party people they were. I didn’t drink and like to be around cigarettes. I kept my daughters away from that kind of stuff. I feel cheated. I still have plenty to do to settle estate. It’s taken me days to weed through just what was piled in her closet. I finally have it organized. Now I get to divide what money is left to people who didn’t come see her. I get to do all the work so others can even tell me not to bother them unless they are getting an inheritance.

Mom’s dementia stole these years. My caregiving robbed me of finishing my race with her since I am so very tired. I feel bitter at family instead of being able to mourn my mom with them.

I miss my mom. I have missed my mom for a long time. I’ll be glad when I don’t feel like this. This too will pass. Thank you lovely people on this website.

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You do have a "love letter" of sorts.
The fact that she trusted YOU with the important things means she trusted YOU
You said goodbye every day...the "woman" you cared for was not your said goodbye when she lost the ability to do each ADL that we take for granted. You lost her slowly, piece by piece, bit by bit that is the hardest way to say goodbye.
You got her strength and she helped you become stronger as you cared for her. No one can be a caregiver and not become a stronger more resilient, empathetic person. This is a great gift she helped you develop, use it wisely and pass on what you have learned to others going through this journey.
Your family mourns, you have mourned for much longer.
You are exhausted. It will take you longer to regain and find YOU again. You will find yourself thinking you have to get home to do this or that only to realize, you don't have to rush home. You will wake in the middle of the night to change a brief, or because you thought you heard her only to realize you can sleep through the night now. (It will be a while before you can do that)
Take your time. Mourn at your own pace. Let no one tell you how you should feel.
Sleep well, you did the best you could that is all anyone can ask..she is at peace.
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Patticake2 Jul 2020
Thank you so much for your lovely and kind response. I will think of your response often and let it carry me through these next rough days. I have copied it to carry with me to the funeral home. I needed to hear it.
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Dear Patticake, can you rest for a few days? The end of the life is never the peace and rest that people expect, because there is so much to do. You must be physically and mentally exhausted. Do you have to sort out all the belongings straight away, and get into settling the estate right now? It just piles more and more issues on you at the wrong time. It would be so good if you could rest and take a break, with a few different things to look at if it is possible for you to get away. Put the other people out of your mind. You have done a wonderful job, and now you need to cut yourself some slack. Best wishes and sympathy, Margaret
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A good friend once told me “You are burdened by the weight of your expectations”

A lot of things that you think should have happened, didn’t. These are things you have no control over.
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Dear Patticake2,

I'm so sorry for the recent loss of your mom. You undoubtedly are hurting deeply for so many reasons.

I think you had unrealistic expectations once she did finally pass away - the peace you thought you'd have isn't there - the quiet you thought you would enjoy isn't there. Please don't put so much pressure on yourself. It seems like you are trying to hurry through what should come naturally. The peace and the quiet will come further down the road. You mentioned that you have missed your mom for a long time which often comes with "anticipatory grief" yet, you're still feeling like it's brand new. That's because it is - you are going through shock. In the movie "Terms of Endearment" with Shirley Maclaine playing the mother of her daughter (Debra Winger) who was dying of cancer, there was the scene at the end in the hospital where her daughter was near death. The nurse came in and checked her pulse and woke the husband saying she was gone, Shirley gets up out of her chair and says "I'm so stupid, I'm so stupid - somehow I thought -- somehow I thought when she finally went that it would be a relief... there's nothing harder ." How true those words are.

Your mourning is different than your dad's for probably two reasons. One simply is the fact that no two deaths of anyone in our lives are the same because your relationship with each one of them is not the same. And secondly, this is the last parent to pass away and often we can feel like orphans even if we have siblings.
When my dad died in 2004, he was my first immediate family member to die - I was 41 but, I also know that when my mom dies, it is going to be ten times harder for both those reasons. My mom is 95 with Alzheimer's related dementia and was near death due to severe dehydration and COVID back in April while in lockdown at her AL facility. She managed to survive and my husband and I moved her to a new facility and placed her in memory care. Because she's never been the same since, I have gone through the "anticipatory grief" at least three times when I thought she would pass away. That was bad enough so I dread when that day actually comes.

Sometimes we don't know about certain parts of our parent's past and things they did because life often gets in the way especially if there is ANY kind of dysfunction within the family dynamics. Don't blame yourself for not being a "party person" - they were being who they were and you were being who you were and still are. There should be no shame for having protected your daughters from a lifestyle you didn't agree with or want them to have for themselves.

I understand your feeling that dementia stole your mom's years - because it did. I understand your feeling robbed in your caregiving role because you are "so very tired" - because you truly are. I understand you feeling bitter towards your family - because you did all the work, they didn't go see her and they don't want you to bother them until you have money to dole out to them. I am going through some of those same circumstances so I "get it." I know you have regrets and I would be willing to bet that all of us have regrets for one thing or another - so you are not alone.

I'm glad you know you did a good job, you were there when no one else was, you know none of the others could have done a better job and you were responsible. Think of taking care of both of them as an honor and wear your badge of courage with great pride. You may not have been able to formally say "goodbye" but, I'm sure your mother felt it.

I hope you will take some "time out" - there will be plenty of time do go through stuff and other tasks that don't require immediate attention. Try and get some much needed rest because when we don't, that's when our emotions really get the best of us. And you are right - "this too shall pass." May God give you great comfort and peace during this difficult time!
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Patticake2 Jul 2020
Thank you so much for your comments. Today I am concerned as to my level of exhaustion. I knew I was tired, but now I see how much. I will take your advice and look at things in a new perspective. I will rest and give myself time to heal. Please know how much I appreciate your guidance and taking the time to answer me.
We have decided to wait until my late sisters birthday, August 7 to put mom to rest. It will give me time to rest and I will be better to interact with the other people who loved her. This website sure has given me strength and comfort. Thank you
Patticake2, I'm so sorry for your loss. This happened to you so recently, so everything will be a blur at the moment. The exhaustion comes from the overwhelming and confusing feelings you have right now. I'm sorry you feel so sad that you don't see evidence of any closeness with your mother, now you are sorting out her things. Remember that these are very early days in your bereavement right now. Be kind to yourself, focus on one day at a time and make sure you take plenty of rest. When my father died almost exactly a year ago, he left details of his funeral wishes and had also written a summary of his life, to help the minister to write a eulogy for the service. There was no mention of me in his life story, even though I was his only child. He left me nothing in his will - I just had a few bits and pieces that my stepmother gave me (basically a few things she didn't want). Despite all of this, I knew he loved me. My husband, aunts and uncles all knew this and told me so. Six months later I decided I would sell these few items and buy some books that I knew we both enjoyed, to remember him by. We both loved literature and poetry and would often share and swap books. I miss him terribly, but I shall have these books forever. My husband feels my father should have made some provision for me, and for our son, in his will, but I've come to terms with this and am at peace with how things have turned out. We can't change what's happened in the past but it's possible to change how we feel about it so it doesn't eat away at us. Give yourself time, and look after yourself as a priority.
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Your post made me cry. I was also very tired when my Dad died, having lived awhile on autopilot. And then there was the final drama from my brother while Dad was dying and the decisions I had to make alone. And then there was all the work (alone) to clear out his place, dispose of things, settle the estate. All the damned paperwork. And my brother wanting his unearned inheiritence, caring more about my father's money than he ever did about my father.

I haven't yet figured out what the next step is. For the first time in my life, there is absolutely no structure. No friends, no family, no job, no dreams.. I took care of the home maintenance backlog and have been trying to declutter, but so has everyone else during the pandemic and places don't want my or my father's stuff. I'm tired of being task-driven. The dog and I walk every day but there is a void of what I would call "quality of life". I realized last night that you can't even make a connection with strangers anymore because the damned mask hides your smile.

Mom died 16 years ago. I had always thought we would go into the sunset together but she got sick and I let her go. She entrusted me with Dad and I did my best. I got to know him better in a different way, which was a blessing in itself, before I let him go. Now I can no longer deny my own mortality. I wonder how I got to be so old.

I, too, want to thank the people on this website. Your advice and counsel was helpful and I felt less alone.
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cetude Jul 2020
I'm 60 years old and caregiver for decades, so I have to start over when mom died. I managed to get a job, but I still feel my life was over the moment mom died. She died October 2019. I just go through the motions of living. but I don't have to worry about CoVID, hurricanes, WW3 -- nothing.
My father passed this week too. I thought I would feel relief. He is free of this world. I am no longer stressed about everything. Yet right now I feel nothing.
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AndreaE Jul 2020
My condolences to you for the loss of your father. Hugs and prayers. ❤🙏
I'm sorry for your loss. My mom and I were extremely close-she was my very heart and soul and I lost her October 2019.

It is no different than someone in prison for years and years--like prison inmates, we caregivers become institutionalized. When let free, they do not know how to live, think or act because someone else dictated that for them. We caregivers also are institutionalized chained to our loved ones because without us they die. I had to do everything for mom--I was her life support 100% of the time for many years. She could not eat, drinks, sleep, activities, take medications, insulin, accuchecks, etc., without me. I really was her life support. In the end she even forgot how to eat and drink so I revoked mom's hospice to get a feeding tube put in her so she would not die of dehydration, which can take weeks. Mom was discharged back home with hospice reinstated so they provided all the tube feeds, pump, tubing, dressings, etc. Because of the feeding tube and good care, Mom died very comfortably and in total peace. Strange, all the medical "authorities" said don't put in the feeding tube, but mom never had a problem with it. It was a 10-minute surgery and she had zero complications. Mom's needs met, she was very comfortable and I checked residuals so it gave me an early indication when her body was shutting down (ONLY at that point I stopped the tube feeding/water as her body was not digesting it). It was easier to give medications because of it for comfort. Residuals started 3 days before she died. Before that she had none and I gave her 4 cans daily with water flushes-zero residuals. Feeding tubes take a LOT of care. So caregivers need A LOT of education on those.

Mom's ordeal of living is over. Mine has only begun. Now at age 60 imagine how bad it is to start over. Decades of caregiving and I"m alone now. Wow. Yes, I indeed understand how it must feel to be institutionalized. For years and years mom dictated my life because I had to adhere to a very strict routine to keep her healthy and life sustained. She died age 90. Even now I find it hard to believe she died. She did, and one of these days so will I, and so will you. So will everybody. That is the "cycle of life" and it is seems ridiculous--I am thankful I never had any kids. I don't want them to go through what I'm going through.

When mom died I felt my life is over.
You are going to have to try to forge a new life without her. The bills keep on coming in no matter what is happening to you.

I think that is the most difficult thing to grasp after YEARS and YEARS of caregiving--you have to life your life without being centered around mom.

Right now you have to sort through the legal garbage. I do not know how much estate preparation you did, but if you did not do any or very little you will have to go through probate. If you did not share a bank account with hers that too will have to go through probate--anything in her name will be probated.

(1) If she had any military benefit such as a stipend or Tri-Care you MUST notify them. Notify Social Security just in case--the funeral home was supposed to do that by law but you never know if something slipped through the cracks.

(2) Notify her bank

(3) Notify HOME and FLOOD INSURANCE. If the policy was under her name only you cannot make a claim on it if something happens.

(4) If she had Medicaid it gets even worse due to Estate Recovery law. Anything that goes through probate, Medicaid could potentially seize after her death. That is why a lot of people avoid Medicaid if at all possible.

You will have a rude awakening when family swoops down like vultures wanting a piece of the money pie, even though they had nothing to do with the care. You find out how people really are when it comes to the money, and you will discover just how alone you really are.

The advantages now is that you will no longer have to worry about her. NOTHING can hurt or harm her. Not CoVID, hurricanes, flu, World War 3. N
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Invisible Jul 2020
I think you must be amazing to have taken care of your mother so well. Good to hear your perspective on feeding tubes. How lucky she was to have had you! I also keep thinking how grateful I am that my folks didn't have to deal with all the stuff that is going on now. My most current skill set is all about caregiving but I never want to do it again.
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My mom and dad passed away in our home within nine days of each other almost six years ago. I had cared for them for the last years of their lives. There were so many things I had not expected as I mourned their passing. For one thing, they had become like children to me, not parents, as their total dependence and need for care had changed our relationship. I didn't realize that and found myself mourning them more as children I had lost instead of parents. I went over situations and events in my mind wondering if I had done enough or if I had done the right thing. While others had wonderful memories of Mom and Dad and Grandma and Grandpa, I remembered the long nights with dementia, the bouts of diarrhea, and the constant balance between encouraging and setting limits.

It was probably almost two years after their passing that memories of them as parents began to return. Some really joyful memories and some painful, but those memories gave me the freedom to be their child again and to realize that I had given it my all when I cared for them. Their response or lack thereof was not the issue anymore.

I would imagine you are exhausted right now. I know I was, far beyond what I realized. It took me a while after their deaths to allow myself to just rest. I felt I had put my own life on hold for a season. I too was the only sibling that accepted the responsibility to care for them. Yet as challenging as it was at the time, I will always be thankful that we had that precious time together. After a while memories change and the good ones seem to be the ones that last. All the "what ifs" and "whys" seem to fade away and you can be blessed that you were the one who stepped up when she needed you.

Thank you for being there for her, for giving up some of what you wanted so that she would be blessed in her final days here on earth.
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My heart breaks alongside you. I am cleaning out my parents home. Tossing garbage, fixing things, organizing so the cannibals can come and grab. They will take all the mementos as their tires screech out of the driveway. They didn’t call - they didn’t visit - they didn’t care. They want the stuff, the money. They write falsehoods on Facebook about their heritage, their dedication and their devotion. It’s all a bunch of lies. I’d like to call them out.

Like you, i was there. For sickness, surgery, cancer, recovery, Falls. Dad’s death. More falls. Hospice. Recovery. Hemorrhage. More sickness. Mom’s death.

It feels so empty that there is now only a bunch of stuff. No mom. No dad. I want to smell their smells. I want to match their socks. I want to replace the light bulbs and oil the squeaky door. I want them to come home.

You are not alone.
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Babs55 Jul 2020
Dear ACaringDaugter,

...except for a few small details, I could have written your comment. My experience matches yours right down to them lying on FB and wishing I could match their socks. Thank you for expressing what I couldn’t put into words.
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