Does anyone else have "afterthoughts" about having placed a loved one who is now deceased in a nursing home?
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.
Sending you a big hug!!!
Find a bereavement support group, it will definitely help. You can check alz.org for support in your area.
You feel how you feel. There isn’t a ‘right or wrong’ way to feel in these situations. Please know that you did all that you could possibly do.
It is completely obvious how much you loved her or you wouldn’t even be questioning your decision. You know that deep down the care she required was more than one person could realistically handle, both physically and mentally.
Is it normal to question something? In my opinion it is. It shows me that you are a person that carefully considers all options and that is to be commended.
I agree with cwille, the elderly are vulnerable. You were your mother’s strongest advocate. Take comfort in that. I wish she hadn’t suffered as she did. I wish you hadn’t witnessed that. I hate injustice of any form. As a society we need to do all that we can to make positive changes for a safe and happy environment for everyone who needs care.
Take care and always remember what you meant to your mom. Something tells me you meant as much to her as she meant to you.
I am in the process of looking at assisted living facilities and I did look at one nursing home. Nursing homes are not rated very well in my area. Judging by the one I visited these ratings are accurate. It was horrible. I wouldn’t want to live there or send mom there if I don’t have to. I can’t even begin to describe my emotions regarding that place and what I saw.
I have to consider my mother’s medical issues (Parkinson’s disease) and finances before I decide what to do.
It’s obvious to me that you did what you had to do in your situation. Your mother would want you to be free of guilt and enjoy your life. You loved each other. I know you cherish those memories in your heart.
I strongly believe that you were an incredible advocate for your mom. If you are feeling that strongly about her care, I think you should speak to the facility about the card she received. I realize that even though you are aware that situations were not your fault, it still hurts. It hurt me when I visited my godmother in a nursing home. She had an awful experience there too. Unfortunately, her sons were unable to provide better care for her. It’s a terrible position to be in, for patients and families.
Also, maybe pass this information onto congressmen or other elected officials in your area. You have a powerful voice. It shows in your writing. Perhaps write a meaningful letter stating how you feel. I feel your passion. I wish you all the best in whatever you decide.
I have many regrets about how my mom's care was handled or mishandled by many. As my siblings chose to let me take the brunt of the care I couldn't be everywhere at once, didn't have eyes in the back of my head, wasn't strong enough to lift mom even though she was a slight little thing. So I didn't really decide, circumstances decided it, but yet I still think maybe I could have done this, should have done that. Just maybe, I could have moved in with her and yet she wouldn't have wanted that. She was so proud and hung on to her independence with all her might. She never let on she was forgetting things and not eating properly, not taking her medications properly. The usual sad, sad story.
Yes, I have many regrets...............always will, even though I know I did the best I could, I still think I could have done better. So yes, I hear you.