Many of you are probably aware of my story... My Mom lived with me for about 20 years, was my best friend - partner in life - and of course, Mom. When she fell and broke her right hip and right wrist, both of our lives descended into a Hell that took 2 1/2 years to end... Mom was horrifically and negligently damaged by the first "skilled nursing/rehab" facility she went to (I put her in?) following successful ortho surgery on hip & wrist... I then found another facility which was compassionate, competent, and caring, but Mom was so damaged by then she couldn't really appreciate the improvements in her environment, and couldn't even take advantage of physical therapy, etc. After a year, she had major surgery (total bypass below her right leg to restore circulation in her damaged foot when she refused to allow amputation). Ten days in ICU, followed by another surgery and 10 more days in a unit just a step down from ICU, and then another week in the hospital when she got hospital-acquired MRSA. A month in a grim and neglectful facility - only because they were able to provide daily infusions of strong antibiotics for the MRSA - and finally an "intermediate nursing home" for the last 1 year of her life...
I saw her almost every day, took her to every doctors appt, or at first followed ambulances or medical transport vans, badgered insurance into outside therapy and took her there 2x/week. I was her only help, her fierce advocate, and it broke my heart when she begged me "Be careful, dear - if something happens to you, I'm toast!" My one sibling, my brother, was killed 10 years ago in a motorcycle accident, I am single and have no children. I was almost as overwhelmed by the paperwork (managing all her medical records and all her bills, spending her savings because she didn't have Medicare Part B, etc.) and learning to deal with gov't bureaucracy when her money was gone and she ended up on Medicaid.
I just couldn't bring her home. She was now blind from macular degeneration, her mental state had gradually degraded, she needed physical help to get up, dressed, bathed, toileted, etc. She was depressed and realistically resigned to her "fate", but begged me constantly to bring her home. We both mourned the fact that "this was to be her life" in a facility. I had to be constantly vigilant, and demand corrective measures from the nursing home... dress her in her own clothes, and please don't lose them, damage/bleach them, etc. Don't put someone else's tight socks on her legs (I'd bought her soft, non-binding socks at "$15/pair) because anything tight could ruin her bypass and she would be "done". She wasn't incontinent, but couldn't "wait forever", so please answer her call button in a reasonable time, don't have a roommate in her tiny shared room who browbeat her and hit her with a wooden back scratcher... On and on...
Now that she's gone, I have to keep reminding myself that I just couldn't prevent all this and bring her home! Maybe I could have? I didn't have a life for myself, anyway... My life probably wouldn't have been any more restricted with her at home than it was effectively living wherever she was, or dealing with issues I didn't always know how to, or resented having to... I feel guilty because it just wasn't reality to "place her in a nursing home where professionals would take care of her and protect her"... I consider that the equivalent of a wishful a fairy tale...
She's now been gone a little over a year. She died when a CNA in the nursing home let her slip and fall when transferring her from a wheelchair to a shower chair. She broke both bones below her left knee - tibia and fibula - and died 10 days later, after a week in excruciating pain, until at last the hospitalist agreed hospice was appropriate and she was mercifully knocked out with narcotic pain IV's until she died. I know that I really couldn't handle her alone. I know rationally it wasn't possible - but my heart just won't quit hurting.
I'm right there with you. I had to place my mother in a nursing home (against her wishes) when her medical needs became too much for me to handle at home, after caring for her 24/7 for over 2 years. She had stage 4 renal failure, congestive heart failure, was incontinent and dementia was starting to worsen. Plus, she was a serious fall risk, having already had a very bad fall at home.
She called me 10x a day for the first couple of weeks, crying and begging me to take her home, saying the NH would drive her crazy. It was terrible. I still feel pangs of guilt to this day about putting her in there. I just had no choice. My siblings all agreed I had cared for her at home as long as I could, and that if it had been them, she'd have been in a nursing home sooner.
Mom was doing pretty well, all things considered - she was even starting to enjoy participating in the activities at the nursing home - she attended a BBQ and sing-along out on the patio one day, and told me all about it during my nightly visit that night. The next morning, I got a call that she had fallen and was unresponsive. She never woke up and passed a few hours later. To be honest, I believe she was gone before she hit the floor - she was sitting on the side of her bed and collapsed to the floor - so, much like her fall at home, I think her heart stopped and she just fell off the bed. It wasn't anyone's fault, and I don't blame anyone for it, because it was going to happen eventually - but it was so sudden when she seemed to be doing so well - that was the hard part.
Don't beat yourself up over this. It's a hard, hard thing to get over, I know. But just know that you did the best thing you could for her when you couldn't do it yourself anymore.
I’m glad you filed reports on the horrible care that your mom received. Thanks on behalf of your mom and all others who suffered and didn’t receive the dignity they deserved.
Yeah, that’s probably the best way to feel about it. You have a good attitude.
Just throwing this out there. You don’t have to take me up on it. What if you became an advocate for the elderly in honor of your mom? Would that help or hurt?
Look, reasonable question, please consider it. I have volunteered in many areas during my life. I know other volunteers and some who could never do it because it would rehash very bad memories.
For instance, I know women who have survived rape, some have felt empowered by volunteering for our local crises rape center. I know one woman though, that said she will never tell the story of that hell again as long as she lives even if it means helping others, nor will she listen to others about being sexually assaulted. I totally understand that and it would do more harm than good if she volunteered at a rape crisis center.
I really understand what you went through. My mother just died. I had promised her that she could come live with us when things got to o hard at home. We even had a ramp built to the front door, turned out dining room into a bedroom complete with lift chair and the nearby bathroom was renovated to be accessible.
All for nothing. My 93 year old mother, in the last 10 years had two catastrophic falls, one requiring total shoulder replacement. MANY more minor falls at home with resulting small fractures causing her so much pain, and then the many UTIS, two requiring hospitalization for sepsis.
After each event, her cognitive abilities were affected badly and she never got back to her previous level.
We kept her in her condo with her long term care policy and then additional nursing. The added nursing care was about $10,000 a month over what the LTC paid.
The last UTI...was so awful. Her dementia was significant and aggression as well. She said horrible things to everyone, and threw things, even breaking the cardiac monitor. She spit pills out across the room.
Worse...she would not stand at all. It took 3 nurses to get her on the toilet. Eventually only a bedpan could be used.
I realized she could not go h ome again. I could not lift her. There was no choice but an assisted living place.
We thought we would have private nursing for awhile until she adjusted but that never happened. We used all of her savings for the nursing care. With just three nurses on the floor there, her needs could not be met.
She had two more UTIs and descended into a semi coma for three weeks until she died. I discovered that morphine was given to her for pain and perhaps that led to her death.
Before she died...she did thank my and my husband for taking care of her. It was her last lucid speech.
I think your mother knew how much you loved her and cared for her. Sometimes all of our plans just do not work out. When bodies and minds fail so dramatically, we underestimate the work needed to care for them.
I am second guessing myself like you and hope and pray that both of us will come to terms with the fact that we did the best we could and placed our mothers in facilities only when we knew they needed more care than we could humanly give.
We spent a lot of hours with them in their last time of life and they knew it and appreciated it.
It is time to be kinder to ourselves. I hope you will.
Your story broke my heart. So sorry all of you had to endure that pain. Hugs! Sorry for your loss. So glad that she had some lucid speech near the end for all of you. She loved you. She knows you loved her. She did. I believe that.