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.
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.
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.
Yeah, that’s probably the best way to feel about it. You have a good attitude.
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.
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.
of care is impossible to manage on your own. It requires a team effort. The
fact that the NH failed her so badly isn't on you, it's on them. They should be
the ones agonizing. Not you.
Think about if you had had her at home. The reality is that with her limitations, she could have just as easily taken those falls at home, injuring you as well. I'm guessing from your description of your relationship, that she wouldn't have wanted you to have died along side her from exhaustion, which would have been a real possibility.
Having been present for a number of people passing, I can say that life does not always depart easily, even with the very ideal level of care. There are those who
living at home with the very best of care, live for months in excruciating pain as this ideal care allowed them to linger far longer than they wished to.
Please allow your mind to fill with happy memories and go on to live your life. From the little you've described of her, I think your mother would have wanted
this for you. It's the very best thing you can do to honor her memory as well as
your close relationship.
Yep, you certainly did not deserve that comment. My gosh, anyone would be taken aback by that kind of remark. That kind of remark is meant to insult. It is in no way a misunderstanding on your part. I’m so sorry that she said such a hurtful comment to you. God bless you.
The thing is
* There were 4 falls that we were know about
* She went to the 4 times (twice for falls, twice for blood sugar).
* She was struggling to stay alive in one of the best places in the area.
* She couldn't control her bowels.
* Her heart was failing and there were no medical solutions in her case.
There was no way we could do it and no way she was going to do it.
Sure, I second guess myself, but it's not like I had practice, I did the best I could and I know that.
I think I'll post this as a new "question"? Maybe someone wiser than I has some positive ideas - a potential solution? - and in some form a guide could be created/available for the future?
I've heard tons of horror stories from her. Nonetheless, guilt is a useless emotion. What will beating yourself up over it do for her or for you? Nothing.
You can certainly get support from all of us who're in similar situations, but only you really know how much you did- or didn't- do for her. So, in the end it comes down to you again, as to whether you did the right thing or not. If not, then think of it as a lesson learned, not as a reason to self-destruct.
Geeez, that is a long list! The elderly have very specific needs, We are ALL going to get old one day and have certain needs. Very few of the elderly don't have many concerns. You have a gift for sharing experiences in a clear way. I really believe you should bring these matters to light, not just on this forum but on a larger scale.
I have seen recently in the media where the actor, Rob Lowe has spoken about caregivers. It isn't lip service on his part. It is near to his heart. He and his brother cared for their mother who had breast cancer. Also Maria Shriver has spoken out in support of caregivers. Have you contacted any organizations or politicians regarding your concerns for the elderly? I think your words speak for many of us who care for loved ones. Please continue to speak out. Thank you for bringing important topics to the surface.
Thanks. God bless you and everyone on this site.
It can be so tough. Wow, leaving your home. Big adjustment. I wonder if our parents truly realize the sacrifices that we have made in our lives to fulfill their needs.
Very true and sensible words!
You’re very welcome. I can empathize. My dad had heart surgery, came through it fine, only to have a stroke while in recovery at the hospital. No one ever wants to think about the worst possible scenario.
I took care of him after the stroke, he did rehab but was never the same. He died in 2002. You know, sometimes feels so long ago and other times it feels like it was just yesterday. Odd, isn’t it?
Your mom didn’t even have a fighting chance. Not fair! My heart breaks for both of you. Take care. She would want you to make the most of your life.
Your story broke my heart. What a compassionate loving giving daughter you are. Do not have any remorse for having placed your mother in a nursing home. You are by yourself and you have gone beyond what a lot of other folks would do. The unfortunate falls took their toll on your mom and honestly unless you had help 24/7 you could not have managed it on your own at your own home.
I can totally relate. I am an only child and my mother moved in with us on November 30th. She had fallen and had a compression fracture in her L3 and now she is in our dining room. It's the best we can do for her. However, she suffers of dementia and had a stroke two weeks and it affected her cognitive part of the brain which is already compromised. Up until now, I never considered taking her to a facility, but honestly as she is declining and she is becoming a two person assist and not comprehending much we say to her, i am coming to the realization that it is going to be time in the near future. I have always felt guilty and terrible to send her anywhere (and I don't even have the best of relationships with my mother), but I now understand that in the next year it's going to happen. Breaks my heart but I know in my heart that I have done everything I possibly can for her. What I am trying to say is don't beat yourself up. You have been an amazing daughter to her and took care of her to the best of your ability. I bet she is looking down at you saying thank you with a smile on her face.
When my father died, my mom was living so I wasn’t alone taking care of him. He died in the hospital in 2002. He was 85. He had heart surgery, came through it fine but had a stroke while in recovery after the surgery and was never the same afterwards.
I did everything for him too. My mother didn’t drive anymore. She had seizures and Parkinson’s.
My mother moved in with me after Katrina destroyed her home. She is 93 with Parkinson’s. I promised my dad I would always take care of her. It’s harder than I ever imagined it would be. Doesn’t matter what kind of relationship two people have. I love my mom dearly and I know she loves me but I am not going to pretend that being a full time caregiver isn’t extremely difficult. It is! Would I do it the same way again? I really don’t know. I missed out on a lot with my husband and children. I missed my friends. I missed being active. I think mixed emotions are normal. I am glad I am here for my mom but I wish I could have been there for my daughters when they needed me or private time with my husband.
I know I do everything possible for my mom, no guilt there. I don’t want to be in a position of not being able to help her and have her suffer. It becomes too much for one person and thanks to so many wonderful people on this site I am beginning to be able to accept it and not feel guilty about it. So I am doing my best to research assisted living facilities and I will visit often but I truly hope to get myself back too. I also want to reconnect with life again, husband, daughters, friends, activities, etc.
As for my siblings, they don’t help so I have no idea if I will have a meaningful relationship with them. I doubt it. I feel like my grandma did, give me flowers when I am living. I sincerely believe that the people who died before us want us to live our lives and feel joy. Yes, we grieve but they would not want us to grieve forever. I know I wouldn’t want my daughters to question everything forever, be sad for too long, etc.
I hope all of us find peace in our hearts because we deserve it. We gave so much of our lives to care for others. Our loved ones would want us to be happy and even if they were awful people, like my husband’s grandma who wrote hate letters from her death bed, we are not responsible for them being mean, she may have been mentally ill, whatever, so we deserve peace and happiness after their passing.
I don’t want to focus on everything that went wrong. I would rather cherish the good memories.
Everyone is different too. Not everyone can handle the stress of full time caregiving or they burn out. No one should make another person feel less than if they can’t do it and find it necessary to make other arrangements.
Let’s not forget that not everyone is blessed with loving family members. They didn’t have healthy relationships with them before they needed help so that’s really hard to be a caregiver to someone that was never a nice person.
I am glad that you brought up co mingling of memory care patients with those who have good cognitive skills. I think that would scare my mom too. Is this done in assisted living facilities as well? I am looking into assisted living facilities for my mom now and I will have to inquire as to how it is handled.
One issue I found when Mom briefly went into an assisted living studio apartment was getting her a phone! She had macular degeneration, and was 96 years old so technology was also an issue, and there were no cell phones she could use. The facility only had several "pull-cords" to summon help in the apartment, and I wasn't even sure she'd be able to reach or see these in an emergency, so a "land-line" type phone was crucial. I could find a cordless phone she could carry around, and with buttons and numbers she could see and feel... The rooms did have phone jacks installed already, and it should have been an easy process to get a phone. We got an "account" set up, with her own phone number, but she could never use her phone because of the local phone company's incompetence at getting a working connection... ("Our remote equipment shows a dial tone/connection") but there was a glitch in their system and there was no working jack! Their "repair" appointment was 10 days away (repair for something that never worked?) and they never showed up. By that time, she was off to another facility and it didn't matter...
Another issue I saw with AS facilities I checked out is that most are not set up for people in wheelchairs, short people, etc. The counters/sinks etc. in the "kitchenettes" are standard height, cabinets are unreachable, and "mini-fridges" are most often set up on counters... Closet rods are often high, and there just doesn't seem to be much thought or planning for special needs...
I visited him everyday while he was in rehab , so I was glad to have him home but I had to have aides 12 hrs a day but at least he was home. After a couple of days he couldn’t even sit by himself and so I had to get a hospital bed.
He passed away after 11 days.
To this day I regret making him stay in rehab all those weeks. I feel that I made the last weeks of his life miserable. At the time I thought he would improve with the P.T. As he had in the past, but it was just wishful thinking. Even though I thought Iwas doing the right thing at the time I still feel guilty two years later.
we do the best we can. You could not have taken care of your Mom alone and you new that, so you did what you thought was the best thing for her. You visited her every day and did all you could to make her comfortable.
Maybe if you see Grief Counselor it would help that is what I am thinking of doing.
So hard to second guess everything. You did what you felt was best. You were dealing with a very stressful situation. No one does everything perfectly even if they want to. Let go of the guilt and do not let anyone else make you feel guilty. Everyone has done things that they wish they could have done differently.
I am now the caregiver for SO with dementia and I hate every single day. I WISH with all my heart that I could have SOMEHOW kept my mom at home. And I WISH the finances were so that I could put the SO in a home and walk away.
As someone who lost their mom in a NH, who was that big mouth advocate for her in all ways, and if I think too hard about it will always have guilt, you have to let go. You must ask forgiveness of your Mom and yourself. You did your very, very, very best and no one ever put a giant S on my chest nor yours. WE ARE HUMAN and we can only do so much till it takes it toll on US, and that is just not right. If you want to blame anything, blame society for letting us caregivers become isolated exhausted shells of our former selves. Be glad it's over now, that you can move forward in peace knowing you gave it your very all. And a lawsuit against the NH that dropped her might be in order as well. I have a picture of my mom that I walk by every day and I always touch her photo-cheek and tell her I'm sorry and ask for strength to get me through this situation now.
I read this on a candy wrapper, "the past is for time travelers and the future hasn't happened yet. Be in the present." My heart hurts still if I think too hard about my own Mom's NH ending, I beat myself up yearly for being SELFISH, though in hindsight I was far from it. But I do not dwell on it, the guilt and regrets have, like with grief, healed over time. If I really call it all to mind it will hurt, but it is not there with me every single day.
I know I did my best. I also know I could have done better too-I think all caring people think that after the fact. But I am not a time traveler. Neither are you. The Past is called the PAST for a reason. Go FORWARD! :) Hugs
You did all that you could. Hugs.