Follow
Share

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.

Find Care & Housing
I'm sorry. I'm sorry your mom had to endure that and I'm sorry you had to bear witness. Occasionally there will be headlines about something horrific that has taken place in a nursing home or in the community, but every day there are horror stories like yours taking place that are unmarked except by those who are living the nightmare. The vulnerable in society, be they children, mentally ill or challenged or the elderly, have always been at the mercy of those who care for them. My petty regrets (and I have many) pale in comparison to those you have endured. The reality is that we are caught between that proverbial rock and hard place, at some point the choices are all impossible. I don't have the answers, I wish I did.
Helpful Answer (13)
Reply to cwillie
Report
ImageIMP Feb 21, 2019
Thanks cwillie - I think I feel particular resentment toward "the system" because in fact I did try to bring attention to the abuse - to the blatant mistreatment of the first facility (and since then I've heard a lot of horror stories of what others have encountered at that same facility). I filed an abuse report/complaint with the State of Oregon... I had a detailed, daily diary which listed all the people, situations, and mistreatment explicitly. I had graphic, clear photos of the accelerating damage to her feet. I had evidence! The State "interviewed staff and witnesses" and found the facility "had a care plan in place", etc. etc. What witnesses? There were none except me! Staff? They would certainly volunteer and recount abuse? My photos were "inadmissable" because they were of a 95 year old woman's feet, complete with a missing toe and fungal nails, but - since I didn't have pics of the "total person" and then incrementally of her feet, etc., it couldn't be proven they were HER feet. Seriously?! I DID get proof - I obtained doctors' photos they'd taken for their records, which validated my photos. Care plan? Only after she was already damaged and I demanded a care meeting! Again, simply following dates and events I documented would have proved this. Anyway, the whole process was exhausting, frustrating, and in the end, infuriating... So - I now believe it's usually not possible to go up against large, rich, corporations - those that own and "manage" many different facilities. They exert too much influence and have too much money, and that takes precedence over human suffering...
(4)
Report
Your post brought tears to my eyes, I hear everything your heart is saying. You did everything you possibly could to take care of your mom! Sometimes, this is what death leaves us with. The pain leaves us questioning so many things & making us doubt that we were doing our absolute best. With me, I think part of it may be my emotions trying to re-work things so my lost loved one could still be alive, which certainly isn’t true or even possible. It can take a lot of mental effort to work through a loss, and in the process, your heart, emotions, and reality can really battle each other.
Sending you a big hug!!!
Helpful Answer (9)
Reply to mollymoose
Report
ImageIMP Feb 21, 2019
Thanks so much for your response... I can tell you really do understand. It seems about the time I think I'm "stable" with her loss, something happens and the wound rips open again... I miss her so much...
(2)
Report
See 2 more replies
Honey, none of us can see the future and you couldn't have known how severe or how long her illness/injuries could become or last. You did the best you could for her. There is no changing things now. Not sure what your religious beliefs are, but I believe your mom is out of pain now and with loved ones. Being as close as you described your relationship, I'm sure she knew you were doing what you thought was right for her and wanted the best for her. And that said, I'm sure she would not want you to carry regrets for the rest of your life, rather remember her with love and a smile for all the good memories you shared.
Helpful Answer (9)
Reply to lablover64
Report

I truly don't believe you should feel any guilt.  With your mom's medical problems, I cannot see how she could have been cared for at home, unless you are so wealthy that money is no consideration. You did the very best you could, but this is not a perfect world. Not your fault.  I'm sure your presence meant a great deal to her. You should be proud of that. But don't doubt yourself because you couldn't wave a magic wand. None of us can.
Helpful Answer (8)
Reply to rovana
Report

You are still grieving, that’s normal.
Find a bereavement support group, it will definitely help. You can check alz.org for support in your area.
Helpful Answer (5)
Reply to anonymous763470
Report

ImageImp,

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.
Helpful Answer (5)
Reply to NeedHelpWithMom
Report

Mine is in a nurse home now. U make me think.... however, you cant blame yourself as you did what you thought was best at the time. Thats all we can do, what we think is best or what we are capable of. She could have still fallen if at home if she was a fall risk. Then you would blame yourself. Either way, you made choices as best you could, it was not easy at all and no one can know how hard it was for you to even make choices for your mom. Please dont beat yourself up. Your mom knows that you did what you could. She is at peace now and will always love you and know that you cared very much. I am sorry that she suffered and i hope that you can find peace for yourself and not blame yourself. I cry a lot because my mom is in a nurse home and i feel guilt, but then i think how its not my fault that she got ill and how i do all i can out of my love.
Helpful Answer (5)
Reply to Hi77777
Report
ImageIMP Feb 21, 2019
I truly hope your Mom is treated kindly and respectfully... I encourage you, though, to be aware and watch for things that need to be "fixed". My Mom was a really private, modest woman. One of the incidents that stands out in my mind is the time I took her to a doc's appt. and while we waited, she crossed her arms over her chest (she had on someone else's huge sweatshirt and I thought maybe it was uncomfortable). When I asked what was wrong, she looked about to cry and said "I don't have a bra on - they couldn't find it!" (she had four 38 DD underwire bras - she needed a bra!) She said "I haven't left the house without a bra since I was 13 years old!" Facilities so badly need to recognize that individual dignity and pride are still issues to old people, and they have a right to be treated as such! Sensitivity training of staff? At the least...
(8)
Report
My mum had dementia and the last 10 weeks she ended up in a nursing home as she needed 24/7 care . She only lasted about 10 weeks when she went in. The last 2 went down rapidly, her death was not expected. We can only do as much for our parents as possible and you did as much as you could for your mum. Taking her home wouldn't have made any difference to the outcome. You now need to think of your good memories and know your mum wouldn't have wanted to continue living life the way things had became. May your mum RIP and you get some peace x
Helpful Answer (5)
Reply to Sunshine15
Report

ImageIMP,

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.
Helpful Answer (5)
Reply to NeedHelpWithMom
Report
ImageIMP Feb 28, 2019
Your experience at finding a horrible nursing home is not a big surprise... I thought maybe an "adult foster home" - someone's private home with only a few residents? - might provide a more controlled, warmer environment? First, it was beyond difficult finding any available slots, especially when by then Mom was on Medicaid (and many wouldn't accept that because they couldn't afford to accept the paltry payments). Also finding homes that were set up and suitable for wheelchairs and some personal help, was daunting! I finally gave up, after the last place was so disgusting I decided the nursing home wasn't as bad as I'd felt! When I first looked at the "soon to be available" room, it was still occupied by a lady on hospice and not expected to live long, I didn't want to intrude and disrupt her, and only peeked in the room to see size, window, etc. Several days later, the owner called and said the room was now available, and could Mom move in by the first of the month? (This was only 2 or 3 days from then). In general, this place was sort of run-down and marginal, so I said I needed to bring Mom there first and see whether she felt comfortable... When we looked at the now-vacant room, I nearly fell over! The carpet was beyond filthy, there was personal "stuff" from the owner in one whole end of the room, but most distressing of all was the nauseating, pungent smell! The sole caretaker/aid (the owner never showed his face again) said the carpet would be cleaned or replaced (in 2 days?), but the smell mostly was from the overstuffed fabric recliner, because the lady who just died spent all her last days in it, and urinated/soiled it. Seriously! Why the Hxxx would anyone show a potential client a room in this condition? Poor Mom was whispering to me "Dear, Please don't leave me in this place!" - not a chance! Instead I reported them to DHS, but I doubt any action was taken because 3 new residents had been placed in the adjoining home, owned by the same guy, the previous week when another home had been shut down by authorities because of poor conditions...
(0)
Report
See 1 more reply
Aw Image, your story sadly is not unique. Unique and devastatingly painful for you but not unique. Ah that it were.

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.
Helpful Answer (5)
Reply to Gershun
Report
ImageIMP Feb 26, 2019
Hugs to you... I'm sorry my story isn't unique...
(1)
Report
See 1 more reply
See All Answers

Ask a Question

Subscribe to
Our Newsletter