Mom died 5/26 after 10 days in the hospital ( 6 days in hospice)...wasting, frailty, stroke, congestive hear failure,autoimmune hepatitis, etc...hospitalized in January for internal bleeding - Feb in rehab ...scheduled to bring her home in March - last minute, doctor and therapists insist she is a 2 person assist - too dangerous for her and caregivers otherwise. Mom wanted to come home with just me evenings, nights, weekends ( like before hospital), and one other caregiver during the day when I worked...I was scared ...convinced her to try restorative care on a month by month basis - pt/ot 5x a week , private room, hanicapped accessible, made new friends in the assisted living restorative care facility ...plan was 2 months ..
then COVD hit - declined in quarantine --- still receved therapy -- but as frailty increased, she refused ot come home...I was scared and begged...she wanted to stay and try to get stronger ( 1 persona assist)...then when she got weaker, refused to come because she said she needed more care than I could provide at home...I cried and pleaded,,,then like that - she was in ER, then hospice due to failing liver and stomach bowel and pancreas issues. I stayed with her 24/7 during the week in hospice - was holding her when she passed...
Now, the guilt paralyzes me....even though I took care of her for 5 years since my Dad died - either stopping over every day when she lived alone, or moving her in with me for 2 years before the January hospitalization , all that counts for nothing now...when she could have come home after her rehab, I extended the rehab to try to get her stronger and to a safe place for home care...big mitake because she never made it that far...and even when i realized she could not longer do therapy and tried to get her to come home again and stay til the end, she would not...wanted to spare me the pain of caregiving as she was dying...my guilt/regret overwhelms me and is making it hard for function. I feel like such a failure for listening to the doctor and therapists about the 2 person assist needed, etc..and not listening to Mom's wishes.... the plan and she had agreed was to try to come home by the end of May --- and she never made it ...never got the chance... thei awful regret /guilt is making it hard to get through the day...how do I ever forgive myself for letting her down ...?????
THIS is not what your mother would want of you. She was so lucky to have you, and apparently you were lucky to have HER, as your love would seem to indicate that. It is now the time to work toward the knowledge of how lucky you were to have one another, and how bereft you are to know she will not come back.
Get help. Often licensed social workers who deal with this passage are good at helping you do the work to get through.
Again, she was lucky. Apparently, so were you. But now she is at peace, and you are in a pain she would NOT want for you. That does no honor to the love your bore one another. The sadness and tears are about your LOSS OF HER, not about your inadequacies. You did a marvelous job. It is my hope that some day you will understand that and know that that perfect understanding is what she would want.
You held your mom as she died!!!! What a beautiful thing! So many would love to go that way! You were selfless and every decision you made was to her benefit- both selfless and beautiful. Don’t let guilt rob you of the lovely relationship you had with your mother. I know it is hard. I am not trying to tell you what to feel, you feel
how you do, but I think you need some encouragement and praise.
My experience is that doctors don’t usually “over do it” when it comes to describing care needs. Many patients have been sent on their way as if they needed little or no help. Believe me if your mother was classified as a “2-person assist”, then you can be assured it was needed. It was a wise move to get her more help in rehab!!!! I am so sorry things turned for the worst, but truly, that could have happened anywhere, including at your home.
Also I am so touched with how your mom wanted to protect and help you! She was selfless in recognizing that her condition would be so hard on you, and likely very wise. We know you were more than willing to do whatever it took to care for her, and SHE KNEW THAT too!
I just see love, love, love, commitment, and selflessness all through this story. You are both encouraging me to be a better person!
Remember the LOVE! 💕💕💕💕💕
May God hold you in His very hand!
You certainly have been through a lot since January and it is very understandable that your emotions are running high. My deepest sympathy to you during your time of grief in the passing of your mom in May.
As I've mentioned in another thread, not only is hindsight 20/20 but, we don't know -- what we don't know. We do the best we can with the knowledge we have in any given moment. Your mom went through so much in such a short amount of time and you were just trying to keep up as best as you could.
None of us has the ability to foresee what happens tomorrow let alone month after month after month. The truth is when it's our time to leave this earth, no one can prevent it no matter how hard we may want to try. Most of us at one time or another go through the "should have, would have, could have but, didn't" mode or "second-guessing" ourselves and the decisions we made. Decision-making is hard enough in normal, everyday life but, it's extremely difficult in stressful and emotional situations such as taking care of a loved one. And a lot of the time, if not most of the time, there are pros and cons to both sides of any decision.
You call it making "a big mistake" - we all make mistakes; you call it "awful regret" - we all have regrets; you call it "guilt" - we all have moments of guilt. It's called being human. People always talk about the need to "forgive others" but, we also have to forgive ourselves. If we don't, it will rob us of the ability to move forward and eat us up inside. As for guilt, it's a killer of our spirit.
Your mom initially wanted to go home evenings, nights and weekends. When the doctors evaluated the fact that she needed a two-person assist at the last minute, you wanted her to try "restorative care" - guess what - she made friends in her new environment! After COVID, she, as a grown adult not only "knew" she should stay but, "wanted" to stay where she would have more care and in the end, she wanted to spare you the pain - those were "her" desires, wishes and choices and they were followed accordingly.
I want to gently remind you that you are not a "failure" and those years of caring for her since your dad died counts - why? because the two of you were together! Sometimes we need to look at the blessings instead of the curses especially during this pandemic. Many people have lost their loved ones during this time of uncertainty. They didn't get to be with their loved one "24/7 during a week of hospice" care - you did. They didn't get to "hold" their loved one (many didn't even get to "see" them) as they were dying - you did. That is something to cherish and hold onto - she didn't die alone! It is heartbreaking to know how many have died alone and how grief stricken the loved ones are who were left behind.
You obviously have a very strong attachment to your mom and you will need grief counseling - it is too much to handle on your own. She had hospice care and they usually offer this service for up to one year - I hope you will take advantage of it. No two people grieve alike. Each of us has our own timetable. Never allow someone to tell you to "get over it" because you don't. Instead you find ways to integrate it into your life. You will be in my thoughts and prayers as you begin a new chapter in this journey. Be kind and good to yourself but, most of all know that it was an honor to take care of your mom!
I want to say you are not alone but in reality, no matter what anyone tells you, you are still alone with your feelings. Sending hugs and prayers your way.