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.
Secondly - you can't undo events that have happened - you can take steps to make sure they don't happen again but you can't change what has already happened - you can do 'what ifs' forever like 'what if mom hadn't gone in the NH?', 'what if mom never met dad?'... you can even go back to 'what if Eve died in childbirth having her first child?' but asking these questions are pointless in the outcome of what is actually happening today
Thirdly - by doing all these unproductive look backs, I believe you are not living up to what your mom would want for you now & in the future - you will always miss her but you must get on with your own life & make a new reality that doesn't have her at the centre - from what you said you have spent the best part of 25 years [= 1/4 of a century] taking care of her in her various stages of life but she is gone now & while you won't forget her ever now she is not who your life pivots around anymore so for your own sake you must either move on or seek professional help to do so
Lastly - you are either at or approaching the age you mom was when she moved in with you - what are your plans for the rest of your life? - are you just going to sit there or are you going to do something positive - maybe start with going on a short trip to a place your mom always wanted to go but didn't get there in the end & wear something of hers like her wedding ring or a favourite watch so whether you get to the top of the Eiffel Tower or the bottom of the Grand Canyon, you can touch it & say to yourself 'I'm thinking of you mom & I know you would love it as much as I do' - by doing this your both honour her & get yourself moving forward to make some great memories for when you can no longer do so
Good luck as you move forward in your life while occationally glimpsing backwards in memory but looking forward in your next stage of life
I AM taking steps to reconstruct my life without her. It's not an instant, or even steady, process? There are ups and downs - challenges that come up without warning, usually when I've let my guard down enough to "feel". I gained about 40 pounds in the 2 1/2 years Mom (we?) went through Hell... In the last year, on my own, and healthily, I've lost 50... I have COPD/Emphysema, but (contrary to my pulmonologist's wishes - no, I'm not dragging oxygen tubing around the house!) I do really well most of the time... In fact, I joined a gym, and for several months (excepting just recently when I got a "bug" going around, which affects my breathing) I've actually be going for 2x/week "weight workouts" with a trainer ("dead" lifts of 85 pounds, pushups, "planking", deep squats with weights - despite my bad knees for which I've resisted replacements for years. I've been "off" for the last 2 months, but plan to work back up to that level... I am STUBBORN (as was Mom). I don't like to be told I can't do something before I try! I've joined a bowling league, a "Meetup" ladies' group, I've kept up with a dog club I've belonged to for years, I play pinnocle every month with 11 friends... So, you see, I DO have plans for my life, I'm not just "sitting here" and I think I am being pretty positive?! Do I look backwards? You bet! There are both good and, admittedly a lot of bad, things to look back at. I wouldn't trade the good memories - and don't want to, am not capable of, occasional only glimpses of the most meaningful parts of my life. Yes, I'll be 70 this year - Mom was 97 when she died - and I don't expect I'll make it to that point.
And, finally - I've worn a Black Hills Gold ring on my right ring finger that Dad gave me when I was 19. Recently, I took the diamond from Mom's engagement ring, picked out a blank setting (rose gold because that was Mom's favorite), and now have a ring for her on my left hand...
Finally, I saw a counselor once a week for over a year... We mutually agreed that the grieving process is so individual in every way, that I AM processing the death of Mom - but the trauma of losing her wasn't simply the pain of the loss, but the even greater pain and stress of the events that led up to that loss. I will make it through - I AM making it through - but I'm never going to forget either the good or the bad... Time has actually softened some of the issues already...
Glad you had a good facility. Nursing homes in my area are awful.
I am going through similar circumstances. My mother lived alone in her condo and then 10 years ago had a horrific fall...breaking hip, pelvis and sternum. So long in rehab but never the same when she got home with numerous smaller falls involving hairline fractures and then another horrible one two years ago, needing total shoulder replacement at age 91. Since then, two life threatening UTIs with sepsis, needing more hospitalization and rehab.
Seeing her in such pain, with accompanying depression, delusions, paranoia, memory loss and rages, was something I would not wish on my worst enemy. The suffering for her, and for me, was immense.
Like you, I advocated and fought for the best treatment possible. In fact and I know you will find this true...I was so busy dealing with all of the issues and personnel that there was very little quality time to just enjoy being with my mother.
I tried so hard and long, to keep her in her comfy home, with help. But I could see that it was unsustainable, financially. It was getting close to $15,000 a month for her care 24/7. She would need two people to get her up from bed or chair and on the toilet and keep her clean.
I had transformed my dining room on first floor, into a bedroom with lift chair for her. We remodeled our nearby bath to make it handicapped accessible. We thought we could care for her here with an aid. All for nothing because I simply was not strong enough to lift her or break a fall if it happened and we could not afford a 24/7 aide.
You acted out of a need for your mother's safety. You would never have been able to care for your mother, safely at home. And you would have been at risk too, for injury, in trying to do this.
My mother just went into an assisted living facility near here. It was a choice of this or a long term care facility. There were many meetings with the nurse practitioner there who assessed her three time and they told me they were equipped to deal with her medical and psychological issues .
I have been second guessing myself since she went in, three days ago.
Your hurting heart attests to the love you had for your mother. I feel that pain too, having to make the decision to have my mother leave her home and go into assisted living.
You did the very best you could under very trying circumstances and I sure understand those.
Your mother understood how lucky she was, to have you as a devoted companion in her last part of her life. I really hope that time softens your grief and that you will not be hard on yourself. Guilt can be misplaced and also crippling. Ask yourself if realistically, if there were any better alternatives to what you had to do. I am sure there were none and your acted out of love for her. Get counseling to work through this...it will help.
Like you… I really couldn't handle Mom alone with Dad because of my disability but my heart just won't quit hurting either.
DEAD WRONG because less than 48 hours later she suffered a stroke there and died days later.
My gosh, so sad. You know what my grandfather used to say? A lot of truth to his comment, he always said that doctors bury their mistakes.
Certainly does apply in your mom’s case.
practical level I made the right choices. It really helps to visualize yourself zoomed out and looking down at the situation and being on the outside and taking out emotions, I
realize I did make the best decisions and I need to power through a super tough situation. This pain and heartbreak is
very common and I can do it too and there is this support system if not right here, this forum.
It's normal to feel what you feel....second-guessing yourself, rehashing the story. Yet let me reassure you, YOU DID YOUR BEST.
And it's ok....it's over for her now, she's out of pain and suffering....it's over...
I didn't really start feeling a bit better until 2 years later, and still I can pretty much cry just talking about it. Losing my mum was primal, and like you, we were very close, esp when I moved back home to care for my parents. Now I'm going through it with my dad...
It's time to nurture yourself like you did your mum.
Small steps. Maybe even consider a grief support group if you feel drawn or talk to a good friend. Have someone listen helped me...
You're a good person. It's time to honor yourself...sending you love and healing for the next chapter of your life....
Since I am her sole caregiver at home, that means I spend all day at the hospital and at the rehab center. I wouldn't have it any other way since the 2 of us have the same connection you describe with your Mom. Just as our parents did the best with us, raising us, loving us, etc. we all do our best with them at the end of their life. Somewhere along the way come forgiving ourselves and having the BEST memories from our years together. I think if you scroll back over questions here, you will find TONS of examples where the mother/daughter relationship was far from loving for a VERY long time. Maybe go to a therapist for a short while and talk through what you did RIGHT with Mom for SO long. Writing in a journal might accomplish the same thing.... (and much less expensive....$5 for a journal;) Maybe write a book to only read to yourself when the grief gets overwhelming....
Put down her funny lines, her favorite meals, places you went together over and over since they were so much fun, etc.
Just as when she was alive, be kind to yourself now that she is gone. Congratulate yourself on all the RIGHT things that were done. Given your story, there are thousands more of those....
I am not sure what makes humans so different when it comes to guilt after the fact. All I do know is your strength when she was alive is the strength you need to grab onto now that she is gone.
Relax, You did everything Possible and Being Beside Her, No Need to Hurt. You can Rest Assure if it was Not for You, Mom would never had Anyone, hun.
My mom is still alive and I have guilt. I tried taking care of her in my home but she was up all hours, trying to get in to my husband while he was trying to sleep because she thought he raped and killed her imaginary daughter, etc., etc. I had to put her in a group home, which is 15 minutes from where I live. She wanted me to take her home (her home when she was a child or sometimes, her home when she was married to my dad). They say "redirect".....well, mom is like a child. You can offer her something sweet to eat during those times but after she finishes eating she's back to I want to go home and crying because I won't take her there. Sorry TMI. I do understand your guilt, but you did the best you could, which is what I am trying to do. I see mom every day as well. Prayers for peace and comfort to you.
Take your time as you sort through her things. May many discoveries bring you joy.
I agree that being part of a bereavement group may be quite helpful. Visiting with a counselor for a while may be helpful as well.
You have done an incredible job as a caregiver, and I wish you well as you heal and create a new life for yourself.
It's All SO HARD!
I realize though that when I was caring for her, I was not always meeting those needs anyway, because I was so task oriented to have some sort of normalcy and order. That thought can also bring guilt.
We do our best to care for the one who sacrificed (as we REMEMBER) to care for us. As a mom, I realize that perhaps I did not sacrifice as much as my children think I did. And if I did, I do not want them to feel indebted to me for that. I just want to do all I can to bring love, peace and joy to their lives, just as I wish to do for my mother.
Unfortunately we only have a certain physical capacity. So, take heart, from what I have gathered you and your mother had a great love for each other. The greatest thing is love. And so we cry some for loving, and laugh some for living.
May God bless you on grief journey, that you may be able to bring to mind happy memories, when those thoughts of guilt and sorrow break into your stream of consciousness.
Bob
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.
After a year of attempts to care for my mom in my home, in a PERFECT setup, we came to the painful realization that everything and anything we could do would never be enough to provide the care she needed.
We placed her in a very good NH, and family was with her EVERY DAY for 5 1/2 years, most days twice a day.
She thrived.
Her caregivers loved her, and she loved them. We loved them as well. Terrible places exist, and so do very good ones. We had the extraordinary good fortune to find a very good place in our first attempt, but we always operated on the premise that if there was no good choice, the job of the caregiver to make the best possible choice of the bad ones.
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.
Personally, I felt bad my mom was in a NH for rehab after a hospital stay so she could get stronger. When she got sick from sepsis, either at the NH or because of the hospital, and she went to the hospital, the NH used that as a way to discharge her (since hospital kept them abreast of how she was doing).
It is hard trying to overcome the hurt from this, but it was made a little better, since the NH she was at is not closed for good. I take that as my mom, helping out others, just like she did when she was alive.
Oh yes, I felt guilt about this every single day, as did my brother.
I would go see her & she would say things like “I thought today would be the day you took me out of here”.
Oh boy- after this I cried for hours.
But we had to place her there. The rationale I hung onto was that generally my mother was safe there, as they provided 24/7 care. Hygiene was an issue as well- she was refusing to bathe.
Looking back I can’t say I would have done it any other way. I wrestle with that decision now but fleetingly and I don’t feel guilty about it (well....just a bit).
Its hard but try to look ahead. Looking back will only make you sad and unsettled. Leave those thoughts back somewhere in your psyche. No it wasn’t easy but try to move past it. It’s water under the bridge.