I took care of my Mom for 5 years after my Dad died...numerous hospitalizations, rehabs, etc...there 24/7. She moved in with me 3 years ago- but the hospitalizations continued as her chronic illnesses worsened - CHF, osteoporosis, liver failure, stroke/heart attack, left side paralysis, etc. After her last hospitalization, she was too weak to come home and SNF discharged her after she maxed out of PT/OT...she was a two person assist, 24/7 care, and still wanted to try PT/OT to get back to a one person assist...then she said she would come home. I got her into a wonderful Restorative Care Assisted Living on a month by month basis. She enjoyed the company of the other ladies, and loved her therapists, and most of her caregivers...her progress was up/down - and I kept encouraging her. I asked her to come home when COVID hit, as I knew she would not do well in quarantine, but she did not want to - wanted to finish her therapy..said she would talk to me about it once that was done.

She developed autoimmune hepatitis and was hospitalized 2.5 weeks ago as her pancreas, liver, etc. were failing. She refused and feeding tube and the doctors said she was too weak for steroids. For the 3rd and final time, she told me she was ready to go - was in pain and to please let her be with my Dad. We did hospice at the hospital and I was with her 24/7 her last week until she passed. I know I did many things right and was a devoted daughter and advocate, handling all her needs these last years, but I can't process of guilt I have for not realizing she was terminal, and not MAKING her come home to be with me in her final weeks. I begged her during COVID lockdown, but now in hindsight, I know her refusal was to spare me the pain of her final weeks... I did not know her death was imminent, and being with her her last week and a half in hospice is little consolation knowing that I urged her to stay in restorative care a few extra weeks...How do I ever forgive myself for my lack of awareness and denial of the severity of her condition?

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Laurabelle, you're feeling guilty about something you had no control over. You did all you could for her and I think you know this. Sometimes grief makes us think too much - asking too many questions. Please don't be so hard on yourself. From what you've told us, I know your mother wouldn't want this. Oh how blessed you were to have each other! I send you my deepest sympathy and lots of hugs. 🤍
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Laurabelle01 Jun 2020
Thank you for your kindness and empathy ...I loved her so much and her passing is so painful. I wanted her with me - not in the hospital ...and I regret her staying at the Restorative Care for extra time on therapy instead of being home where I could care for her personally...
"..I know her refusal was to spare me the pain of her final weeks..."

"...but she was worried about me taking care of her because she said her needs the last 2 months were much greater that for the previous 2 yearsbut she was worried about me taking care of her because she said her needs the last 2 months were much greater that for the previous 2 years..."

Your mother was caring for her child in one of the few ways still available to her. Please do not dishonor her loving choice with needless guilt. Be thankful for all the wonderful years you had such a mother!
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It sounds like you gave mom a choice and she wanted to continue with her therapy.
It also sounds like your mom was a strong willed woman with a mind of her own. Was she (some might say feisty others may say stubborn) always?
YOU have nothing to be guilty about. You helped her get the care she needed
YOU were there for her the last 5 years and more so the last 3.
Wise woman to refuse a feeding tube.
Once someone is on Hospice it is usually that the doctor has indicted that they have 6 months or fewer. Some live longer, most do not.
You are grieving. It is normal to feel guilty. It is normal to go through all the stages of grief.
It is now time to take are of yourself.
Go easy on yourself.
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You don't say how old Mom was? If you had brought her home, you would have been responsible for her care. Hospice is not there every day. Believe me, she was more comfortable where she was. When hospice was not there the aides and a Nurse were. Its just a shame that the virus kept you from being with her. Lack of awareness...maybe more like denial? You didn't want to admit to yourself that you would lose Mom. Look at is as your care gave her some extra time with. Your Mom seemed like a special person. She took your needs in consideration and she was ready to go. People just get tired of being poked and prodded. Please, don't feel guilty, you did everything you possibly could and Mom had the ability to appreciate that. You were a good daughter.
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Laurabelle01 Jun 2020
The hospice part I am learning to be at peace with - I was there with her 24/7...the hospital put us in a private room and let me stay with her the entire time. The guilt is for not making her come home during the COVID quarantine and encouraging her to do PT/OT after discharge from the hospital. At the time, I did not know death was so close, and thought it would better if she could gain some strength and independence. She said she wanted that as well hindsight, the last few weeks she was probably dying - eating less, not feeling great...I begged her to come home for Easter or Mothers' Day and just stay ...she said she was too tired and weak ... was comfortable there ...I just wanted her home, but she was worried about me taking care of her because she said her needs the last 2 months were much greater that for the previous 2 years I had cared for her after she broke her neck and had the stroke/heart attack . She was cared for well ...just feel guilty because I was not allowed to be there due to COVID - until she was taken to the ER for the last hospitalization.
By remembering that the alternatives would have been worse for your mother.

Your being aware of and accepting the severity of her condition would have kept that knowledge centre-stage in her last months. As it was, together you ensured that she stayed positive and motivated, maximising her quality of life, throughout.

Had she come home, she would have had inferior care. It would not have been possible to meet her nursing care needs to the same standard in a domestic setting, and that's flat. You wouldn't have had the equipment, the supplies or the number of spare hands to do it.

But I think that what you are feeling, when you are able to look at it in perspective, is probably not guilt but grief. You have lost your mother, and nothing anyone can say will make that hurt any less, not for now. I'm so sorry for what you're going through and I wish you comfort.
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