Does anyone else have "afterthoughts" about having placed a loved one who is now deceased in a nursing home?

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Does anyone else have "afterthoughts" about having placed a loved one who is now deceased in a nursing home?

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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.

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You and your mom went through so much. And it is so unfair that her care was so bad at times. I, too, tend to revisit my many decisions regarding mom and dad. So many difficult ones. The fact is that while all was happening, you were having to react to each problem. Advocate, advocate, advocate. These things would occur "rapid fire" and at each turn, you did the very best you could. I was caregiver for mom and dad; Dad passed in 2017 and mom in 2018. It seemed as soon as I came up with a solution to one problem, two more took its place. There were times I definitely felt overwhelmed, exhausted, and sleep-deprived. The reality is that finally, now, you and I have the time and energy to actually process all of these things....a luxury we didn't have before. And if you're anything like me, you try to learn from your experiences. But please don't fall into the trap of second-guessing your actions. Like me, you had to do all of this on your own. If you had other family to share in the tasks, you would also have other family to share in the burden of your decisions and loss and grief. You and I know that it is a tremendous undertaking for one person. Your mom recognized the value of your care and love. She knows as my parents know, that everything you did was out of care and love. I won't tell you not to think of the bad things that occurred, but I will tell you over and over again, that you did the best you could at that time and I will suggest to you that each time you process the difficult memories, please follow it with revisiting a fond memory. My mother once said about relationships that if having an argument, make sure you get the last word, .....but make sure that word is full of love. As I am going through what you are, thank you for sharing your question.

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Lynina, thank you so much for your meaningful and caring response. You really touched many chords with me, and expressed so much of the way I feel... Yes, it just seemed there were always multiple issues to handle, and no end... I was also grief-stricken at the mental and physical pain she had to suffer for 2 1/2 years before she passed. In the end - I'm sorry, this is pretty graphic I hope not too hard on people - when a CNA let her fall while transferring her in the shower and she broke both bones below her left knee, they at first thought she'd merely sprained her leg... By the end of the day, though, with the swelling and bruising and discomfort, she was transported to ER, which x-rayed, and simply splinted her leg and sent her back to the NH. The NH was in no way equipped for the level of care she needed at that point. She became progressively worse for 3 days, until finally she was screaming in pain and went back to the hospital, where they let her scream for another3 days ("we can't give her any more meds for the pain because it could kill her...") Seriously?! By this time, they thought she'd probably had a minor heart attack, very probably had a clot in her lung, her kidneys were failing, etc. - and she had zero chance by this time for any future quality of life. Finally, the hospitalist on staff - another angel! - asked what I wanted and I said for her to have peace and be out of pain! I told him I would - and had - fight tooth, claw, and whatever else I could muster for her if there was any potential for a meaningful life, but at this point there was nothing to fight for except her right to peace... (Boy, was THAT a hard pill to swallow!) and he mercifully suggested hospice be called (he estimated she would go in 12-24 hrs). She stayed in a different room in the hospital, all support and monitoring except IV pain meds was removed, and the waiting began... She lasted 3 more days, while I sat in the room by myself and watched and waited... Early in the morning of the 3rd day, I told her (I'd been talking to her all along, but...) that I knew she worried about me, but if she wanted to let go I would be OK... She could see my Dad (who died in 1970 at 55 yrs old, when I was 19), her sister and brothers, her best friends - almost everyone she cared about had already passed. Mom was never a physically demonstrative person (old country German Mom... tempered by Irish Dad - well, did I say something about temper?) and I am huggy and frankly emotional. So, periodically, we had a routine where I'd give her a look (she KNEW that look!) and say "OK, it's time - too bad, so sad, just suffer through it - but I need a hug!" She'd make a big show of discomfort (I know eventually she actually liked it, but had to play it out!) and I'd hug her, tell her to put her arms around me and squeeze, and then I'd squish the heck out of her and kiss her cheek! That morning, I leaned over and said "Mom, too bad because you can't do anything about it, but I'm going to kiss your cheek! I leaned down, and kissed her on the cheek, then said "OK, now it's your turn!" and I put my cheek down to her mouth... She sort of stirred, then made a "kissy" movement with her mouth... I'm afraid I lost it then! She died about 2 hours later...

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ImagineIMP - I'm so sorry you are hurting so much. I, too, think of my dad every single day and wonder if we could've kept him home. I know in my heart of hearts that we couldn't. There was no way my mother (84) could have given him the care he needed, especially at the end. He became so violent at home. It was only a matter of time before he hurt my mother. My dad died after 5 months in a NH from dementia at 92. He couldn't feed himself, walk or talk. The end was horrible. I just keep telling myself that we cared for him the best we could and at the end we just could not do it. I tell myself... it was just 5 more months... but there was no possible way my mother could do it. Me and my sisters work FT. We all did the best we could. The facility he was in took great care of him. He was clean, fed and safe. I will always regret we couldn't keep him in his home of 60+ years and I keep hearing him tell me that he wanted to die at home. I feel the guilt and I pray to him everyday and hope he knows we did the best we could. He died in September and I miss him so much. You're not alone! Hugs and prayers.

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Linda I would submit that he did die at home. Maybe not his body but his mind did and that's really the important thing right? My guess is he was barley aware of his surroundings if at all by the time he went to the NH so his last memories were of happiness and peace at home, his body just lived a little longer and was well cared for while it did, his spirit stayed right there in his home of 60+ years with his wife and family until his body was ready to let go and now it's with you everywhere. Sounds to me like you did fulfill his wishes, including the one about taking care of your mom and I'm sure he is smiling down on you every day as you are thinking of him and doing everything he can to will the guilt and second guessing out of you.

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I am so sorry you are hurting. Please remember that she is out of pain now and wouldn't want you beating yourself up over the "could have, would have, should haves". You did the best you that knew how give all the circumstances. Please, if you can, consider getting counseling of some sort. It took me over 6 months to finally admit I needed therapy after my dad died and then saw a counselor once a week and then once a month for about 3 months and was just happy that I could express all my sadness/guilt/ and so on to someone. {{HUGS}}

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I would suggest that you seek out a Grief Share program in your area. They have them all over the country. On their website you can just add your zip code and it will pull up a list of locations near you. Their structure is they have participants who have experience grief from the loss of a loved one meet together once a week for 13 weeks and share their experiences, their pain, and their grief. They have a weekly video that deals with complications most experience through their journey of adjusting to losing a loved one. Questions can be answered and experiences shared in a way that is very therapeutic. I participate in one of the programs and find it helpful.

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Yes – My mother took a turn for the worse in late August and I ended up with her in the ER. It was determined that there would be no long-term recovery and she opted for comfort care. Unfortunately at the time my teenage son was recovering from a broken leg and about to start school for the year. My husband worked nights driving truck. I am an only child and lived in another state working full-time. We kept her in the hospital for about a week until a bed in one of the facilities she chose opened up. She lived about 10 days after the move. Had I know she had so little time I would had not placed her. I know I would not be able to care for her in her home but had I moved her to my house and brought her sister with me I think we could have given her a more peaceful last few days.

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The only afterthought that I have is that I could have probably sued the NH my late mother was in. Here's why - They held a family meeting with my mother present. They said to her "Ma'am, you're too well to stay here." Ummm wrong answer!
DEAD WRONG because less than 48 hours later she suffered a stroke there and died days later.

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Llama,

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.

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I still feel that way about my mom more than my dad. Mom went to the nursing home due to her broken leg and arm. She kept begging my dad, and me that she wanted to home after she healed. She felt lonely, and depressed. I tried to visit her everyday, but due to my cerebral palsy, I couldn’t drive. Six months later, Mom died with a lot of complications. I was shock because about six weeks before she died, she was fine on her birthday. I kept my promise to Dad that he wanted to die at home, and he almost did, but he ended up going to the hospice. A day later, he died.

Like you… I really couldn't handle Mom alone with Dad because of my disability but my heart just won't quit hurting either.

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...and, families, ANY Family, has conflicts. My Mother, when alive, called me her "Einstein." Dad thought I was pretty clueless. In Late middle age, I must admit-dad was closer to being Right-lol. While he could be short with people, his attitude was, "if you can't have fun when you're young, when CAN you have fun?? When you're Older, you have obligations." Whereas Mom would overprotect me, but also push me in "Genius" directions that I couldn't handle. When my Mother died, I hadn't passed the test to get into Residency yet. Her decline was certainly one reason for this, but there were issues as well. Sure, Father loved Mother and me, but, at the back of their minds, they want to be able to have a new squeeze and pursue retirement activities after the period of mourning. He couldn't for over a year, because I hadn't made it yet. He didn't remarry, and, at the time I was grateful for that (certain female relatives didn't like "wicked stepmothers") but, of course, that meant he would never have a caretaker other than myself.

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I really feel your pain. You were a faithful companion on your mother's end of life journey. No one could have done better.
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.

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Enshope, I truly hope your Mom does well in AS and the rest of her life is as comfortable as possible... Your story mirrors so much of mine it's uncanny, except that (because of an abusive and incompetent "skilled nursing/rehab" center) my Mom never made it home after her original fall and broken hip & wrist... (That was the goal and hope but that was impossible by then). I advise you to just be vigilant and pay close attention to the details of your Mom's facility... Finding a good nursing home was - in my experience locally - nearly impossible... I think the NH where she ended up, an "Intermediate Nursing Facility" is probably one of the better places, but the problem there is that the same owners had another facility, a "memory care unit", on the same property... When a resident in the memory unit became medically needy, they were sent over to the nursing facility. If their medical issue(s) didn't clear up, though, they were kept there and didn't return to the memory unit... I feel so terribly sad for people whose loved ones have dementia issues - it seems like losing someone twice - but at the same time, the issues caused by the "mixing" of medically needy residents with dementia patients was almost catastrophic... I didn't realize this at first, didn't realize the impact, alarm, the noises and behavior would have on my Mom, until the night she became totally out of control and panic-stricken... I was called because she was trying desperately to "escape" in her wheelchair - trying to get out various doors, fighting off anyone nearby, refusing to take her meds... On the phone with me, she begged me to call "911" to help her, told me if I didn't get there soon I'd never see her again... When I got there, she refused to take her meds, and finally - crying, which I'd almost never seen my Mom do - begged me not to let them give her the "zombie" pills... She was panic-stricken and thought she was fighting for her life because she thought the dementia patients' behavior was purposely caused by meds in the facility... Again, I am so sad and sorry for people dealing with dementia and the resultant behaviors in their loved ones, but it just wasn't fair to co-mingle everyone that way?

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I know this sounds strange.....but my Mom wasn't put in her nursing home by choice. She fell three times in one morning, was taken to the hospital, then placed in the NH she's in now. She then fell again in the skilled nursing side of the home....and they decided that at that point, she couldn't return home anymore. She was too hurt from her first three falls and this latest fall only sealed the deal for her physically by knocking out her confidence at that point. So I didn't get to choose her nursing home....but I did get to choose her rehab facility which doubles as a nursing home. I don't regret it because the staff have been amazing in taking really good care of her. They even received an award for the percentage of falls in their facility (or lack thereof) back in 2017. I hope my story helps you to find some solace in knowing this; you did the best you could with the information you had in front of you. And that's all anyone can really do as both a caregiver, a daughter and your mother's advocate. God bless you for airing your grievances here~you'll find what you're looking for if you keep moving forward and remembering that you were able to spend a great amount of time with someone you loved all the way up to their final days.

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mmcmahon,

Glad you had a good facility. Nursing homes in my area are awful.

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Firstly - hindsight is 20/20 - you know what happened to her but what would have happened if you had her home? YOU JUST DON'T KNOW

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

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Moecam, I kind of feel a little reactive at your post? You are ever so practical, which of course is often necessary, but I'm just not "built" to be so pragmatic and frankly quick to "get over it"? Contrary to the general gist of your post, for the vast majority of the time we lived together - yes, over 20 years - I didn't take care of her, but rather we took care of each other... We were best friends, companions, roommates, in reality "life partners", and I couldn't have hoped for better in any of those roles. She was a really bright, funny, competent person until the very end of her life (at 88 I had to take her to the local college 2x a week because she took 2 semesters of Russian - starting with 2nd semester - and got "A's". She was bored, had always wanted to learn, and fiercely believed in "use your noggin or lose it!" Yes my life mosty revolved around her, but I needed her and appreciated her and vice versa! It wasn't a sacrifice - it was a full and healthy relationship based on love, "like", respect and yes, convenience.

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...

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A very similar thing happened to me, and without sharing a huge long story, my mom was my bestest friend in the WHOLE world. I am also single, no kids-but it reached a point of -I just cannot go on like this.

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

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Cherrysoda,

You did all that you could. Hugs.

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My husband of almost 54 yrs had Lewy Body Disease, He was diagnosed in 2013 but it started prior to that. He also had a silent stroke which went back to about 2010, leaving him with right side neglect. His disease caused severe hallucinations, muscle rigidity, and he lost the ability to absorb new information, And to follow instructions. He had toileting issues because his aim was off and he did not sit in the center of the toilet due to the right side neglect. He also lost his balance a lot and constantly fell. As the disease progressed there were multiple visits to the emergency room and several hospital stays. He went from the hospital to rehab for physical therapy. He only stayed one week the first time and opted to go home and have home P.T. He got stronger after that. By the end of 2016 he had deteriorated and was hospitalized for another week, then released to rehab again. He did not want to go but at that point I would have been unable to handle him. He begged to go home but I thought he would improve with the P.T. As he had the first time, so I made him stay. After 3 or 4 weeks there was no improvement and he couldn’t even walk, so the discharged him. My son-in-law built a ramp to get him in the house I got a wheelchair and a sit to stand lift to get him to the toilet.
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.

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JPC,

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.

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ImageIMP,

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.

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Yes NeedHelp, I believe to some extent AL facilities also involve residents of varying cognitive stages, but I'd just make sure if someone with advanced dementia was causing a disturbance and distress to other residents there would be other arrangements required. Often, there are different degrees of living quarters available within a larger complex, and it can be a relatively smooth transition accomodating individuals' needs. It's all just very sad, though...

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...

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I think many of us question things because it’s something we haven’t been through before.

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.

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good morning ImageIMP,

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.

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Good luck to you - I understand promises! I promised my Mom she'd never go to a home, but life has a way of dealing some cards we didn't see in the deck...

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NeedHelpWithMom: Thank you so much. I loved your anaolgy, too.

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Llama,

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.

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My sister and I did our best to keep our wonderful mother in our homes. Though it was difficult, we pushed through when she wandered outside to a busy road, woke and scared my young children in the middle of the night and needed medical care. At some point though, we had to recognize that we simply were no longer capable of taking care of her ourselves. Mom did not want to go into a facility but for her own health and safety, and our own, we had to make that decision. I would be lying if I said we didn't sometimes feel guilty about it, but we have no regrets as it really was the only true option. Stop beating yourself up about your mom. It sounds like you did a lot for her and gave up a lot of your own life for quite a while until it was no longer feasible. Recognize what you were capable of and how long you did stick it out.

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CareNow2,

Very true and sensible words!

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You feel guilty because you could not fix something that was impossible to fix. But you are just a mere human, not God. You did the best you could with the circumstances that were given to you. I think you should realize you did all you could and she was in a place where there were people trained to care for patients like her. You did not do anything wrong. Please remember the good times and give yourself a chance to feel some peace.

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Makes sense but a lot of us view things a different way. I have power of attorney but never thought these decisions would be so hard.

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NeedHelpWithMom: Oh, I am so sorry for the loss of your dad. My dad only lived to age 50-had a massive coronary attack and in 1967 Heart Bypass Surgery was not in the works yet. I actually left my Maryland home in 2013 and moved in with my mother as she demanded to live alone in her own home in Massachusetts. God bless you!

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Llama,

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.

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IMP,

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.

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ImageIMP, thanks for your reply. When our loved ones receive subpar care that have devastating consequences, the result is the need to process anger as well as loss. I, like you, have witnessed life-altering and life-ending actions, in the treatment and care of my parents. Questions and considerations run through our heads about how to deal with this type of traumatic experience. Being able to talk about it helps so much in releasing that frustration and anger and by doing so, hopefully these events don't overshadow all the memories of a lifetime. I hear you and support you.

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You were a huge blessing to her! How lucky she was to have you for so many years! My prayer is for Gods mighty hand of peace on you friend, she is free now and no more pain you must free yourself too, not sure where you live but try nd find a support group with others in similar situation

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NeedHelpWithMom: You're welcome. And big hugs to you. No, I really don't think that our parents planned ahead. My mother was ready to send me home right away. I was called "Hitler" by her. I was taking care of her so how dare she call me that. I was making sure that she ate, took her medicines and a whole 18 page diary of tasks.

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Hitler! Geeez, that tops the list for insults.

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My ex girlfriend worked at a nursing home and said they're often staffed by people who have managed to get the minimum credentials, but who seriously lack ethics. She couldn't keep up with having to make up for the neglect of her co-workers who just didn't care. She said they all acted as though they'd never be caught at anything because, as one of her coworkers said, "if anyone really cared about them, they wouldn't be here."
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.

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Right now, my mother is in a Geri – psych ward to get her meds figured out. Has been in and out of the hospital the last couple months with a UTI and pneumonia and spent a short time in a nursing home for rehab. Besides her caregivers, the bulk of the night time was on me three times a week and I was being drained with no help from family. The rest of the family feels she now needs to go to a facility for good. My goal has always been to keep her and my dad both home until they leave this earth . I wake up every morning with so much on my mind about what to do. I know in my heart it will be hard but I seriously think she needs to come back home instead of going to a facility and then being moved again to the facility that has the waitlist. Even bringing her home until she comes up on the list and making her leave again is a difficult decision.

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It is just so hard to know what is best... Good luck with your difficult decision(s) and just know that you're doing the best you can. The fact that you're agonizing over those decisions, and have caring goals and even doubts about what to do shows that you honestly care about your loved ones, even to placing their needs ahead of your own... Follow your heart, but try to temper it with enough time and regard for yourself to keep yourself sane! So hard...

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I second-guessed everything I did, even Mom's last days which I found myself thinking should have been at her home.

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.

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Your statement "it's not like I had practice"... is so significant! I wish there was at least some sort of manual - guidelines - book? - that helped people know how things work, what to look for, do, feel. It isn't right or fair that the story is the same - OVER AND OVER - of struggle, panic, grief, despair, frustration, exhaustion - for everyone who has to deal with situation that hits us without warning! Gee, our loved one is devastatingly hurt, and we are expected to instantly know all the in's and out's of what to do! Surgery or not? Nursing home/rehab/skilled nursing/assisted living/adult foster home... What do all of these mean, entail, and how can "we" figure out what (or where) is best when we have probably 2, 3, 4 days to decide and act? I keep wracking my brain trying to figure out some way my experiences (and others here with similar or "new" situations) can be morphed into some positive form for others who follow... There just has to be a solution? We shouldn't have to re-invent the same story over and over!

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?

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I don’t have an answer, I just want to tell you how sorry I am that you’re going through this. Without something in place for situations like this—full at home care coverage for example—situations like yours and mine are going to happen. I could and had planned to stay home to take care of my husband who is in the final stages of frontotemporal dementia, but I’m told I’d need help, which we cannot afford and insurance dies not cover. There is so much guilt involved with placing him somewhere else. I leave him crying nearly every day. Try to put your mind at ease. Someone told me recently that perfection is not required, and you clearly did everything you could. And your mother knew it.

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NeedHelpWithMom: I know, right?! I said "Mother, do you know that Hitler killed 6 million Jewish people?" Thank you very much-NOT!

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Llama,

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.

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I am sorry for all that has happened. However, your mother was old and had many problems. I really don't think you could have kept her at home and what you did, in relation to her care needs, was the best option. No one wants to go into a nursing home and it is horrible to witness the sadness and horrors that come along with that scenario. However, until we become GOD and can fix things, we just often do not have a choice. And sometimes these people are so frail and weak, it is like moving a bowl of jello - things happen, not deliberately, they just do. But it can also happen at home. You did the best you could do for her - you loved her and she knew it. What had to be done and was done was not your fault. I hope you can find some peace in the obviously good relationship you had and that she is no longer suffering. Now take care of yourself.

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You did the very best you could, you truly went above and beyond. That level
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.

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Does anyone else have "afterthoughts" about having placed a loved one who is now deceased in a nursing home?

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